TIF Magazine - issue 59

TIF MAGAZINE_APRIL 2011_www.thalassaemia.org.cy_1

PRESIDENT’S ADDRESS

TIF PresidentPanos Englezos

Dear Friends

2010 has ended and with it a successful phase in TIF’s history ofactivities and existence. Over the past year, our Federation hasmanaged to promote recognition of haemoglobin disorders byofficial bodies and national authorities of many affected countriesand offer support to their programmes and strategies, but also toraise awareness in the global community by spreading knowledge.

Now, in 2011, we move forward, monitoring progress and ensuringthat our commitments are fulfilled and our promises materialised.Based on past years’ experiences, we will work in a more targetedand focused way, strengthening our networks and accelerating ourefforts for collaboration with national health authorities andinternational dignitaries to achieve our mission.

This year started with exciting events around the world. The pasttwo months have seen the organisation by TIF of delegation visitsand workshops in many countries, including Russia, Vietnam, Laos,Cambodia, Morocco, Indonesia, and Albania, aimed at raisingawareness about thalassaemia and sickle cell disease. In somecountries, this was TIF’s first delegation visit, and in others wereinforced our bonds of friendship and collaboration.

The final preparations for the 12th International Conference onThalassaemia and Haemoglobinopathies and the 14th TIFInternational Conference for Patients and Parents in May 2011 inAntalya, Turkey, are underway, and we look forward to seeing youthere! Be among the first to learn about new medical advances andapproaches, TIF’s new collaborations and friendships, and bepresent for the Board elections and the General Assembly. You canfind the final programme in the centrefold, and the registration andaccommodation forms on the last pages of the magazine.

Many projects are successfully ending or entering a new phase, andyou can read all about them in this issue. Our focus this year is onbuilding networks of patients and medical specialists in all areasthat touch upon thalassaemia, and strengthening our ties with our

members and associations globally. Moreover, we look to buildingnew associations, starting new projects and completing newpublications.

You will see our efforts – and yours! – reflected in this magazine.We thank you all once again for your valuable contribution and help– we could never have done it without you.

This year is dedicated to the fight against health inequalities andthe promotion of equal access to healthcare.

TIF has always advocated equal access to quality healthcare forevery patient with thalassaemia across the world, and in 2011 wejoin the global cry for HEALTH EQUITY. In keeping with this year’smotto for Rare Diseases “Rare but Equal”, the World ThalassaemiaDay motto is “Equal Chance to Life”. However, last year’s motto,“Knowledge is Power” remains a major objective and goal, sinceone could well argue that equality cannot exist without knowledge.Informed patients have control over the management of theircondition, because they are aware of possibilities and options, ofthe existence of new treatments and drugs, but also of the resultsfrom clinical trials and new scientific findings. Informed patientscannot be easily manipulated; they know their rights.

Let us work together to ensure an “Equal Chance to Life” for everypatient with thalassaemia across the world. Together we can do somuch – Unity is our strength! Spread the word and send us thestories of your experiences with health inequality for our next issue!

Join us in our upcoming 12th & 14th InternationalConferences in Antalya in May 2011 and take home newinformation and knowledge.

Panos EnglezosTIF President

“... This year is dedicated to the fight against healthinequalities and the promotion of equal access tohealthcare”

A warm welcome to all our readers. Best wishes from all of usthe Thalassaemia International Federation for the start of a new,healthy and happy year 2011.

Through the pages of this issue, the first of this year, you willtravel with us around the world. You will escort TIF’s delegatesin many countries where they organised workshops and assistedpatients’ organisations in strengthening their voice and formingfederations and alliances at the national level. You will followthe developments of TIF’s international projects, and revel withus in the important results produced and the new levels ofcollaboration achieved. You will hear about patients’experiences and read the reports from different associations ofthalassaemia patients. You will be updated on the activities ofinternational and European health organisations, the awards inrecognition of individuals’ important contributions to the fieldof thalassaemia, and the important upcoming events for thisyear.

Our magazine is a tool which always keeps you updated onimportant news and developments. This issue focusses on thetopic of health equity, which is a major issue in this year’spolicies and discussions. Our hope and wish is that, when suchmatters are discussed at the national or even local level, you, theinformed patient and reader, can offer a knowledgeable opinionand influence the policy makers for the benefit of thalassaemiapatients world wide.

As you will notice, this issue does not contain a section onMedical Focus. The reason is that our next two issues, comingon the heels of the 12th International Conference onThalassaemia and Hemoglobinopathies and the 14th TIFInternational Conference for Patients and Parents in May 2011

in Antalya, will be entirely devoted to medical matters. Thesewill include scientific abstracts and key presentations from theconference, as well as high quality articles in simple, everydaylanguage written by international experts who collaborateclosely with TIF.

I hope you enjoy reading this issue of TIF Magazine. Do keepsending us your news and contributions, as well as suggestionsand comments. We always look forward to hearing from you –our friends, our collaborators, our reason of existence.

Join us in our upcoming 12th & 14th InternationalConference in Antalya in May 2011, the greatesteducational event on thalassaemia in the world! Learnabout the latest advances and possibilities, gather asmuch knowledge as you can, and inform others. It’s inyour hand!

CHIEF EDITOR’S ADDRESS

TIF MAGAZINE_APRIL 2011_www.thalassaemia.org.cy2_

Chief EditorDr Androulla Eleftheriou

Dr Androulla EleftheriouExecutive Director

“...Our magazine is a tool which always keeps youupdated on important news and developments...”


TTIF BOARD MEMBERS

Panos Englezos – President (Cyprus)

Shobha Tuli - Vice President (India)

George Constantinou – Secretary (non country affiliate)

Riyad Elbard – Treasurer (Canada)

Katrina Demetriou - Assistant Treasurer (UK)

Anton Skafi - Assistant Secretary (Palestine)

Fatemeh Hashemi (Iran)

Robert (Bob) Ficarra (USA)

Mouna Haraoui (Lebanon)

Christina Stephanidou (Greece)

Ramli Mohd Yunus (Malaysia)

Dawn Adler (non country affiliate)

Michael Michael (UK)

Musa Zenelaj (Albania)

Nailya Guliyeva (Azerbaijan)

Gargi Pahuja (USA)

Loizos Pericleous (Cyprus)

Manal Safwat Shoukry (Egypt)

EDITORIAL TEAM

EDITORIAL TEAM

Chief Editor

Androulla Eleftheriou, PhD

Editor

Chrystalla Thoma, PhD

Contributors

Kareem Karassery

Anton Skafi

Riyad Elbard

Fathieh al Dmeiry

Prof Ali Taher

Costin Radu Ganescu

Altaee Thair

Dr Michael Angastiniotis

Dr Matheos Demetriades

Reproduction of material published in TIF Magazine for educational purposes isencouraged, provided it is accompanied by the following attribution “...according to TIF Magazine, the official newsletter of the ThalassaemiaInternational Federation”. The contents of any scientific article or presentationof any material by manufacturers does not imply the expression of any opinionon the part of Thalassaemia International Federation. The mention of specificcompanies or products does not imply that they are endorsed or recommendedby TIF in preference to others. The contents express the opinions of the authorswho alone are responsible for the views expressed. TIF does not accept any legalresponsibility for their contents.

TIF MAGAZINEThalassaemia International Federation

PO Box 28807, 2083 Nicosia, Cyprus Tel: +357 22319129 / 22319134

Fax: +357 22314552E-mail: [email protected]

www.thalassaemia.org.cy

Designed by Team Up Creations Ltd Printed in Nicosia

6_ Board Members Corner

6_ TIF Board of Directors

9_ TIF Projects

12_ TIF Activities

16_ TIF Visits

19_ TIF International Conferences

19_ 12th International Conference On Thalassaemia And Haemoglobinopathies &

The 14th TIF International Conference For Patients And Parents

20_ Scientific Programme

22_ Patients and Parents Programme

24_ Satellite Symposia

April 2011

4_TIF MAGAZINE_APRIL 2011_www.thalassaemia.org.cy

26_ News from Around the World

26_ Achievements of Thalassaemia Patients Friends Society Palestine in 2010

26_ “The Student As A Health Educator For His Family And Community”

26_ WHO Blood Transfusion Safety Programme

27_ Rare Disease Action Day in Canada

27_ Second Romanian Workshop on Thalassaemia Major

28_ National Thalassaemia day observed in Malabar, India

28_ Ninava Thalassemia Society: hard-won success for thalassaemia patients in Iraq

30_ Featured Articles

30_ Patient’s Stories

31_ Tributes and Awards for Distinguished Individuals

34_ 8th May - World Thalassaemia Day 2011

35_ Special Report on Health Equity

37_ Upcoming Events

37_ Events Calendar 2011

39_ Registration / Accommodation Form for the 12th International Conference on Thalassaemia andHemoglobinopathies

_5TIF MAGAZINE_APRIL 2011_www.thalassaemia.org.cy

TABLE OF CONTENTS

AAnton SkafiAssistant Secretary

Anton Skafi, a patient with thalassaemia himself, studiednursing at St. John Ophthalmic Hospital in Jerusalem, wherehe worked for 17 years, after which he held the position ofoperating room nurse in a private hospital. Currently, heworks in a private ophthalmology clinic.

Anton joined the fight against Thalassaemia in 1995 as theleader of the Thalassaemia self-help group in easternJerusalem. In 1996, he was invited by the ThalassaemiaPatients Friends Society in Palestine to join its first Board. Ayear later, he was officially elected on the Board and servedas a deputy chairman. He became involved in TIF's work in2000, attending the Board meetings as an observer. Lateron, he joined the Board as a delegate. In 2006, he waselected officially on the Board of TIF at the position ofassistant secretary, a post he holds to this day.

As an expert patient with good knowledge aboutThalassaemia, Anton’s participation in the fight

against the condition, both at the national andinternational levels, draws directly on his personalknowledge and experience. In this capacity, he isactively involved in the educational programme of hisassociation and TIF, giving numerous presentations atconferences and workshops as an expert patient.

Anton firmly believes that thalassaemia patients can beempowered through knowledge and that they should beactively involved in relevant health policy developments atthe local, national and regional levels. Only by doing so canthey ensure for themselves a better quality of life. We arevery lucky to have Anton as a Board member andcollaborator. His untiring and dedicated efforts have made agreat difference in the life of thalassaemia patients.

Robert FicarraMember

Robert Ficarra is one of the most active current Members ofthe Board of Directors of TIF and one of its Founding Fathers.

“beloved friends and valued collaborators ofa lifetime in our fight to ensure qualityhealthcare”

TIF Board of Directors


BOARD MEMBERS CORNER

In this issue of TIF Magazine, we present to you another four esteemed members of our Board of Directors – beloved friendsand valued collaborators of a lifetime in our fight to ensure quality healthcare for every patient with thalassaemia across theworld: Anton Skafi, Robert Ficarra, Ramli Mohd Yunus, and Michael Michael.

He held the post of President of TIF for 8 years, and also ofCooley’s Anemia Foundation (CAF) for 12 years. Currently,he holds the position of Vice President of the InternationalAffairs and Board Member of the CAF-USA. Son of theFounder of CAF, Robert Ficarra had many reasons to becomeinvolved in the fight against thalassaemia.

For him, the disease was not distant, but part of hislife. He experienced thalassaemia’s devastating effectswhen two of his siblings died of the disease. Later inhis life, he also adopted a child with thalassaemia. Hisfight for a better life for all patients with thalassaemiastarts at the personal level, driving him to give his bestand allowing him to feel the pain of every patient andparent in suffering.

In the course of his administration of CAF as president,Robert Ficarra promoted the establishment of theThalassaemia Action Group (TAG) – a patients support group– and the organisation of two New York Academy of ScienceSymposia. He has been a member of the Board of Directorsof TIF for 25 years and led a great number of delegationvisits on its behalf to Israel, Palestine, Jordan, Trinidad andArgentina, among others. His commitment is deep andcomplete, and his contribution at the national andinternational levels invaluable. TIF is extremely proud tocount Robert Ficarra among its Board of Directors members.

RRamli Mohd YunusMember

Ramli Yunus, graduate of Human Resources and BusinessManagement, has been a member of the Board of Directorsof TIF since 2006. Married to a thalassaemia intermediacarrier, he is involved with the condition at the personallevel. In the late 80s, he founded the Kedah ThalassaemiaSociety for parents and patients in Malaysia, before beingelected as the first Secretary of the Federation of MalaysianThalassaemia Societies (FMTS), and later, in 2000, as itsPresident.

Now a director of a private company, partner in a localrestaurant and Chairman of the government state SultanahBahiyah Hospital Board in Alor Setar (northern Malaysia), heparticipates in the committee of National Prevention andControl of Thalassaemia in the Ministry of Health. He actedas co-chairman of the National Thalassaemia Seminars in thiscountry in 2001, 2004, 2007 and 2010.

Ramli Yunus has led and joined in a number ofdelegation visits in Asia. His personal motto is “Help usto help others”. He has been instrumental in thepromotion of effective policies and strategies forhealth in Malaysia, and also through his activeparticipation in TIF’s work at the international level.

Michael MichaelMember

Michael lives and works in the UK and is employed by MWBBusiness Exchange as their technical support manager.Michael, a patient with thalassaemia himself, was thepresident of UK Thalassaemia society (UKTS) for 10 years, atime for which he has to show significant progress and anumber of achievements.

Michael is a fighter, having stepped into policies andlobbying for the improvement of conditions forthalassaemia patients in the UK. For TIF, his criticalmind and insightful recommendations are invaluable.He has led and contributed to a number of official tripsand delegation visits around the world gathering dataand making contacts on behalf of TIF in affectedcountries.

Michael has recently stepped down as the President of theUKTS; however, this does not mean that he has left the fightagainst thalassaemia. In fact, he works harder than ever topromote thalassaemia awareness both at the national andinternational levels, representing the UKTS and TIF. Michaelis actively involved in social work, especially in the field ofcommunity engagement. He acts in a consultative capacityto the Department of Health, UK HaemoglobinopathyForum, healthcare commissions and the National Institute ofClinical Excellence (NICE) on policy matters.


BOARD MEMBERS CORNER

Send us your newsIf you have important news you want to

share with the world thalassaemiacommunity, let us know!

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TIF MAGAZINE_APRIL 2010_www.thalassaemia.org.cy

TIF PROJECTS

Epidemiology Project

This is an ongoing project of TIF. New features of the projectinclude the preparation of comparative tables withinformation on carrier rates and annual affected births,treatment services and their quality, national preventionprogrammes and health/economic indicators per country.Another new feature is the preparation of global mapswhere the above information is represented in colour scales.The micro-mapping is intended as an essential tool for thetailoring of support to each country’s specific needs, and thecolour maps constitute a new, improved visual aid.

The new aspects of the project will facilitate theidentification of high-risk countries in urgent need of aid,but also countries with exemplary health systems andnational programmes. The description of the latter can beused so that other countries can tailor their needs and modeltheir health care systems accordingly.

Two articles are currently being drafted for publication inscientific journals – a global review of carrier rates, annualaffected births, treatment and prevention, and theircorrelation with health expenditure and economicindicators, and a second one regarding the impact ofmigration on thalassaemia prevalence in each country.

ENERCA

The last ENERCA conference in November 2010 in Madridwas successfully completed. Members of the Board of TIFand TIF’s Medical advisor were present. The six workpackages of the project were presented and discussed, andtheir respective progress evaluated.

TIF leads working package 5 (WP5). At this stage, it includesthe development of a general protocol for the creation ofguidelines, the establishment of guidelines for prenataldiagnosis, the production of educational materials forpatients and families, and the analysis of questionnairesreceived in the survey of patients’ expectations of expertcentres.

Chain of Trust

This ongoing project focuses on building confidence andacceptance of telemedicine solutions amongst patients andhealth professionals. The official kick-off meeting for Chainof Trust took place on January 31 – February 01 in Brussels,in which TIF also participated. The project has two core

Working Packages reflecting two specific objectives: toimprove available knowledge of the specific views – needs,perceptions on the added value and concerns – amongpatients and health professionals with regard to telehealthservices (WP4), and ensuring that awareness andunderstanding of patient and healthcare professionalperspectives on telehealth are brought to the forefront.A preliminary plan of action has been prepared and avideoclip on how to use telemedicine is now at the planningstage.

TIF’s Patient Organisations and MedicalSpecialists Regional Networks

Work with doctors and patients for the organisation andexpansion of networks within member countries and newcountries is in progress. The European Network was officiallylaunched last year at the Pan European Conference in Berlin.The Asian Network will be officially launched in the comingmonths, while in America, the creation of national networksis in this year’s plans, with a view to integrate them into anAmerican Network also. In 2011 and 2012, we look to thelinking of these Regional Networks into a Global Network ofPatients’ Organisations and Medical Specialists in the field ofhaemoglobinopathies, which was the original concept andthe culmination of this project.

Endocrinology, Cardiology and Liverspecialists networks

Over the past year, and recognising the deep need to spreadmultidisciplinary care for patients with thalassaemia, TIF hasbeen working on forming two core specialists networks, aendocrinologists’ and a cardiologists’ network, respectively.Purpose of this initiative is to establish networks ofcollaborators, to identify specialists in the different Regionsto form initially the core groups, and establish specialisteducational programmes. Consequently, in each region andwithin each country of the region, a core group ofendocrinologists and cardiologists will exist, specialists whowill be fully aware of medical complications existing inthalassaemia and how to address them and be responsibleto undertake the education and training of more suchspecialists in their country, so that multidisciplinary care forpatients is provided.

The first meeting of the two networks is planned to coincidewith the 12th International Conference in Antalya in May2011. TIF’s next move will be to expand and develop a thirdcore group of liver specialists, an initiative expected to be

_9

visit our website www.thalassaemia.org.cy

launched within the year.

GGlobal Network of Nurses inhaemoglobinopathies

The global network for nurses was initialised in 2009 inrecognition of the special role played by nurses in multi-disciplinary thalassaemia care. The nurses’ network providesa platform for communication, enabling collaboration andproviding education for nurses all around the world.

A major deliverable of this initiative is to develop a guidelinespublication for the clinical management ofhaemoglobinopathies specifically from the nurses’perspective. The work on this publication is advancing withthe collaboration of experienced, specialised nurses whohave already joined the network. The number of participantsis increasing by the day and we are very happy to see thisproject grow.

The first meeting to discuss progress of the project tookplace on 12th and 13th February 2011 in Cyprus. In itscourse, an editing committee was formed and the structureand methodology of work was finalised. The meeting wasvery productive and the writing of the book is nowunderway.

Expert Patients Programme

As was announced in the previous issue of TIF Magazine, TIFlaunched its ‘Expert Patient Programme’ initiative, anongoing, challenging project which aims to encourage andempower patients from across all affected countries,through education and knowledge.

The first meeting of the ‘International Core Expert PatientsGroup’ (ICEPG) took place in London in November 2010, aday prior to the TIF Board Meeting. During this meeting andworkshop, TIF’s Secretary another and TIF Board member,coordinators of this project, presented the goals, objectivesand methodology used. In addition, the first basic material -drafted by TIF’s medical Advisor and TIF’s Executive Directorand based on presentations of international experts whoparticipated in TIF’s educational programmes through theyears on all the above topics – was distributed to all ICEPGmembers.

The ICEPG members had the opportunity to make theirsuggestions, to adopt the prepared material, and to assignmedical experts to review the material. The latter is veryimportant, as the experts need to ensure that the medicaland scientific credibility of the material is valid when it is‘transformed’ into a simpler, more comprehensible languagefor the patients. A timeframe for the completion of eachindividual step of the project was also set. Finally, it wasdecided that the International Conference in Antalya would

be the venue where all the material would be completed andfinalised - in time for the first training workshop for themembers of the ICEPG scheduled for July 2011.

The Expert patient programme aims to train and enableparticipants in the following capacities:1. to manage their condition in the best way possible;2. to discuss their condition with their physician in acompetent and informed manner; and3. to discuss and lobby with their national health authoritiesand government for the implementation or reformation ofhealth policies to improve their quality of life.

The programme’s main objective is to have educatedpatients in every corner of the world, because Knowledge isPower!

e-MSc Course

This year TIF is redoubling its efforts regarding the promotionand funding of the highly significant e-MSc course, whichoffers professionals the opportunity to specialise in the fieldof haemoglobinopathies like thalassaemia from a distancethrough e-learning. Promotion will focus on advertising thecourse more widely and creating a relevant database.Funding needs to be secured from a number of sources andwe aim to ensure that nine candidates will be enrolled by theend of 2011, and every year from then onwards, at leastseven of which originating from low resource, highlyaffected countries.

We need your assistance to encourage the medicalspecialists to integrate this valuable course in their curriculaand assist us in gaining international recognition of the e-MSc as a postgraduate course.

Thalassaemia Emergency Guidelines

In view of the often inexistent or suboptimal knowledgeabout thalassaemia and other haemoglobinopathies in theemergency room, and the absence or restricted use ofelectronic patient records for haemoglobin disorders, there isoften considerable delay and misdiagnosis of a patient’scondition with severe repercussions on the patient’s health.Several countries have begun attempts to rectify theproblem. A manual with instructions is needed to avoid thedelays in the emergency room and ensure the correcttreatment is given.

TIF has embarked on such a project, preparing a manualentitled ‘Emergency Guidelines’, in collaboration withinternational medical experts in thalassaemia. Our plan is tomake this manual available at every emergency unit andhospital across the world, especially for cases where apatient arrives unconscious to the emergency room,unaccompanied by someone who can provide the necessary


TIF PROJECTS


TIF PROJECTS information about his/her condition to the attendingdoctors.

Brand new translations of essential TIFpublications

‘’About Thalassaemia’’ has been translated and printed in anumber of new languages, including Malay, Bulgarian,Romanian, German, Lao, and Nepalese. The Spanish

translation is undergoing final corrections. ‘’Guidelines forthe Clinical Management of Thalassaemia’’ has also beentranslated in more languages, including Farsi and Greek, andthe translation has started in Chinese and Arabic. The set ofthree educational booklets (‘’About α-thalassaemia’’,‘’About β-thalassaemia’’ and ‘’About Sickle Cell Disorders’’)and ‘’Patients’ Rights’’ have been translated into Greek andare now in the final proofreading stage.

TIF’s cartoon ‘’All About Thalassaemia’’ finally in print!

The cartoon ‘’All About Thalassaemia’’, for ages three to at least ninety-three, is aunique production of TIF and we are extremely proud of the result. The book wastested by means of a pilot study at the Junior English School Nicosia in November2010, with the enthusiastic participation of several teachers and their pupils, and theircomments were included. The cartoon explains thalassaemia in simple but correctterms for everyone, children and parents, pupils and teachers, and anyone interestedin learning about thalassaemia. Requests for copies have already been made to TIFfrom Thalassaemia organisations and associations all around the world.

Thalapump 20

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Designed to fit the new standards of iron chelation


TIF ACTIVITIES

TIF Around the world

On November 27–28, 2010, in London, took place TIF’s mostrecent Board Meeting. Many important issues for TIF, such asthe global economic crisis and the difficulties and challengesfor fundraising worldwide, and of course medical and otherhealth and social concerns of patients were among the top-ics discussed. Iron chelation and falsified medicines consti-tuted major subjects. The two days were packed with pre-sentations and intense debates on the work of TIF in 2010,

the problems, difficulties and achievements but also the wayforward in 2011, and TIF’s plan of action and expectations.Important decisions were met and plans of action finalised inthe course of the meeting. The Board Members were updat-ed on all TIF activities, and left with renewed motivation fortheir everyday struggle to ensure quality life for thalassaemiapatients in their own countries and all around the world.

TIF Board meeting November 2010in London

TIF ACTIVITIES


Visit from the First Lady of Syria November 2010

Rare Disease Day organised by the Cyprus Alliance for Rare Disorders (C.A.R.D.)with TIFʼs participation.

The 28th February is Rare Disease Day. The event was firstorganised by EURORDIS (European Organisation for RareDiseases) in 2008, and is now widely celebrated in Europe.Since 2009, new partners from the US, China, Australia,Taiwan and Latin America have joined in the action. Thisyear, the spotlight was on “Rare Diseases and HealthInequalities” and the theme was “Rare but equal”. Morespecifically, in 2011, Rare Disease Day advocated for equalaccess for rare disease patients to health care and social serv-ices, to basic social rights such as health, education, employ-ment, and housing, and to orphan drugs and treatments.In Cyprus, for the occasion, C.A.R.D. (Cyprus Alliance for

Rare Disorders) organised a press conference in the presenceof the Minister of Health of Cyprus, as well as medicalexperts and patients/parents, and the mass media. With thisevent, C.A.R.D. and TIF participated along with alliancesfrom a number of other countries in a campaign for raisingawareness on rare diseases, including thalassaemia and sick-le cell disease.

On 5th November 2010, Her Excellency Mrs Asma al-Assad,the First Lady of the Syrian Arab Republic, visited TIF in thecontext of an official government visit by the President ofSyria to Cyprus. TIF’s President and Executive Director hadalready met with the First Lady in May 2009 in the course ofthe First Pan Middle East Conference. Thalassaemia consti-tutes a grave problem for Syria as well, and Her Excellency isvery invested in the topic.

Accompanied by the First Lady of Cyprus, Mrs Asma al-Assadvisited our offices, met with the President and the ExecutiveDirector of the Federation, and discussed issues tangent onthalassaemia and ways to support efforts for the effectivecontrol of thalassaemia in Syria. With the opportunity of thisvisit, Mrs Asma al-Assad was invited to join the Global Circleof Dignitaries project.


TIF ACTIVITIES

Blood: safe and effective transfusionthrough professional education

The European School of Transfusion Medicine (ESTM) is anon-profit Association recognised as a non governmentalorganisation (NGO) under the Italian law, managed by aCouncil of Administration and an Executive Committee,and guided by Scientific and Advisory Committees. The aimof ESTM is to provide specialist teaching of TransfusionMedicine, of an international and European character, foralready established scientific and professional specialists,physicians, and other graduates and paramedical personnelunder specialist training.

ESTM is the result of a series of studies and discussions onthe teaching of Transfusion Medicine, originated in theCouncil of Europe (in 1963 and 1985) and developed (from1990 onward) by the International Society of BloodTransfusion (ISBT) within its European Regional Congresses,and by the Italian Society of Transfusion Medicine (SIITS-AICT, later SIMTI) through its "Symposia for EuropeanCooperation".

On 30th March 1992, ESTM was established in Milanothrough the signatures of the Constitution Act and of theStatute by twelve promoting members: the then Boardmembers and the previous Presidents of SIMTI. The birthand the rapid growth of the ESTM are proof of the pro-found need for increased harmonisation of the teaching ofTransfusion Medicine in Europe. So far, eighty-four courseshave been organised in twenty-eight European countries,but also in Israel, Senegal, Argentina, Brazil, and Peru.

Course of the European Schoolof Transfusion Medicine in AlbaniaMarch 2011

On 16th to 20th March, 2011, ESTM organised a course on“Transfusion Medicine: development in Albania and inEurope” in Tirana (Albania). TIF’s Medical Advisor and TIF’sclose collaborator Philip Chircop, high official on the Boardof IFBD (International Federation of Blood Donors) partici-pated with presentations on the role of patients’/parents’support groups in the promotion of voluntary blood dona-tion, the joint promotion of voluntary blood donation andawareness of screening for haemoglobinopathies: feasibili-ty, advantages and results, and the moves towards eradica-tion of homozygous thalassaemia in Cyprus with an analy-sis of the sequence of different steps to its achievement.Both TIF representatives also met with the national healthauthorities, government officials, but also patients/parentsand medical experts, assessing the current situation of tha-lassaemia and SCD in Albania.

First Scientific Conference on Rare dis-eases – organised by the Cyprus Alliancefor Rare Disorders

In the context of the Cyprus Alliance for Rare Disorders’strategic plan for 2011, the first national scientific confer-ence for rare diseases was organised in Nicosia, Cyprus, on19th and 20th March 2011. The event attracted many mem-bers of the medical and the patients/parents community ofCyprus, and benefitted from the presence of officials of theministry of health of Cyprus, and representatives fromEuropean health organisations, such as the EuropeanOrganisation for Rare Diseases (EURORDIS). The latter sent amember of its Board to give a speech on their behalf – ProfMirando Mrsic, a haematologist with great knowledge andexpertise in his own country, Croatia. The conference wasvery well attended and received excellent comments. Webelieve that the event was very successful in disseminatingknowledge and spreading awareness about rare diseases ingeneral, and thalassaemia in particular, in the country.

Both events organised by the Alliance received full massmedia coverage. We are happy to see thalassaemia obtain asignificant position as a rare disease in Europe, where for along time it was considered a condition restricted to immi-grants and unfortunately, as such, received very little atten-tion.

For further information, please contact addmedica101, rue Saint-Lazare F-75009 PARIS

www.addmedica.com E-mail: [email protected]

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TIF VISITS

Thailand / November 2010

November 2010 saw the second official visit by TIF toThailand, after TIF’s organisation of the International bienni-al TIF conference in Bangkok in 1999. This visit was extreme-ly productive and informative. The delegates met with theDean of the University of the Thalassaemia Centre in SirarajHospital and with medical community experts involved in thetreatment of thalassaemia in Bangkok. TIF visited wards inthe day care clinics where patients receive blood transfu-sions, and had a meeting with the patients/parents thalas-saemia federation of Thailand. The delegation also met withthe Minister of Health of Thailand, Mr Jurin Laksanaswit,who committed himself to providing further support andworking with TIF, sharing and utilising its experience andknowledge in control strategies.

Thailand has made enormous advances in prevention, geno-typing, and phenotyping management of patients. TIF iscommitted to working with the health authorities and themedical community to further support patients’ rights andraise the quality of services to patients across the country,including the establishment of a reference centre inBangkok.

China / November 2010

The progress marked by China over the years has been dra-matic in both the prevention and management of thalas-saemia. As a close follow up on the signing of a joint plan ofaction between TIF and the regional Guangzhou authoritiesin May 2010, TIF organised this delegation visit and the firstworkshop in Nanning, Guangxi.

TIF representatives met with health officials, and TIF reiterat-ed its interest in the needs of patients and the supportrequired in this part of China. The delegation receiveddetailed information on the progress, decisions, and com-mitments by the Chinese government on the issue of thalas-saemia, which included a detailed plan of national preven-tion strategies and improvement of health services providedto the patients. TIF also organised an educational workshop,the first half of which was dedicated to health professionals,

and the second half to patients/parents. Ample interactivediscussions took place, a fact which pleased us, because pro-viding information and education constitutes one of TIF’score activities.

Egypt / December 2010

A London and Cyprus-based travel company, OlympicHolidays, has donated an automated system for the identifi-cation of carriers of haemoglobin disorders to Egypt’s CairoUniversity, through the mediation of the ThalassaemiaInternational Federation.

A relatively high proportion of Egypt’s population are carri-ers of the severe form of beta-thalassaemia. Therefore, ascreening process is required, preceded by a campaign ofpublic awareness. Dealing with the large population in Egyptis a vast undertaking and the University of Cairo’s PaediatricDepartment under Professor Amal El Beshlawy and ViceDean Prof Lobna Fawaz are to be congratulated for initiatingthe effort.

Such large numbers require an efficient laboratory infrastruc-ture and the Thalassaemia International Federation, a long-time ally to Egypt’s efforts to deal with the problem, has rec-ommended automated laboratory systems. Prime movers inthis effort were TIF’s President, TIF’s Executive Director, andTIF’s Secretary. Olympic Holidays, a company known for itsannual donations to needy causes, generously stepped inand purchased the laboratory system (Biorad-Variant II),which was delivered to Cairo University in a solemn ceremo-ny on Sunday 19th December 2010. The donors were repre-

sented by Company Director Mr Nicos Mylonas. The instru-ment was accepted with thanks by the Vice President of theUniversity, Prof Hussein Khaled, as well as the PaediatricDepartment heads and staff. Present at the ceremony wasalso Dr Faten Mofta, Director of the Blood TransfusionBanks, as representative of the Ministry of Health of Egypt,and the Head of the laboratory of the University Hospital. Allexpressed the belief that this is the beginning of a nationalprogramme to control thalassaemia in Egypt and allexpressed gratitude to the donors.

MMorocco / January 2011

As part of TIF’s monitoring of the progress achieved in thecountries of the Maghreb region, a member of TIF’s staff vis-ited Morocco between 27th and 30th January 2011. In thecourse of the visit, the delegate met with members of theSteering Committee and evaluated the progress of theiractivities, and also with the President of MATHED, the localpatients’ association, for an update on the progress achievedin the establishment of a national control programme forthalassaemia in Morocco. Our delegate also saw patientsand parents and discussed the ways in which TIF could assistthem. In Rabat, a high level meeting was organised with Ministryof Health officials – Dr Mustapha Mahfoudi, Chief of Non-communicable diseases, Dr Hicham El-Berri, responsible forthe Thalassaemia Project, Prof Charif Chefchaouni Al-Mountacer, Director of all Hospitals in Rabat, and Dr LindaAlami, Director of the Children Hospital in Rabat. The issuesdiscussed included the current situation of blood transfu-sion, chelation treatment and reimbursement, but also howTIF can best support national efforts in the implementationof a national thalassaemia control programme.

TIF’s delegate also met with the Executive Director of thePrincess Lalla Salma Foundation and, in Casablanca, with thePresident and members of the Haematological MedicalAssociation as well as members of the Paediatric Society ofMorocco. Both Societies expressed the wish to collaboratemore closely with TIF in organising further educationalevents, and we are of course delighted!

Cambodia / November 2011

TIF, in collaboration with the Department of PreventativeMedicines of Cambodia, co-organised a workshop forum forthe discussion and exchange of ideas on the ‘CambodianGuidelines for the clinical management of thalassaemia’,which have been based on the TIF Guidelines. After a lively,interactive discussion, the final draft of this document wasadopted by the quorum. Once they are endorsed by theMinistry of Health, the Guidelines will be printed and distrib-uted across Cambodia.

TIF’s delegate met with the Director, Dr Prak Piseth Raingsey,and the Vice-director of the Department of preventativemedicines to assess progress and plan future steps, includinga three-year joint plan of action, a patients’ registry and pilotprevention schemes in the big cities, as a starting point. TheTIF delegation also met with the Paediatric MedicalAssociation and the Chancellor of Phnom Penh University, aswell as with the local thalassaemia association to strengthencollaboration ties and offer support for thalassaemiapatients across the country.

Laos / February 2011

This was TIF’s first exploratory delegation visit to assess thesituation of thalassaemia and to meet with TIF collaboratorsin the country. The TIF delegation met with the medicalcommunity and discussed ways of educating healthprofessionals on the prevention and control of thalassaemia,

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TIF VISITS

but also with patients/parents to discuss problems and heartheir suggestions. A unanimous vote was taken for theestablishment of a Laos Thalassaemia Association before theend of the year. ‘About Thalassaemia’ has already beentranslated in Lao and is expected to be distributed topatients/parents across the country. Finally, the delegationmet with the Vice Minister of Health and it was agreed thata three-year joint plan of activities should be draftedtogether with TIF over the next year.

Russia / February 2011

TIF has exerted great efforts over the past year to open a lineof communication with the Russian Federation. Russiaconstitutes a very significant focal point in TIF’s efforts toassess the extent and status of thalassaemia and otherhaemoglobinopathies in the wider region of the ex SovietBlock. TIF’s goal is to establish a solid and productivenetwork of medical experts and patients/parents in theRussian Federation.

TIF had the opportunity to meet with Russian specialists andhealth officials, when the Medical Advisor of TIF visitedMoscow on 14th and 15th February 2011 for two importantevents: a symposium on the prevention and clinicalmanagement of haemoglobinopathies co-organised by ourFederation and the Scientific Centre for Child Health ofRussia, and for the 15th Congress of paediatricians of Russia“Actual problems of paediatrics”. He gave presentationsdesigned to present the issue of thalassaemia in all its scopeto raise awareness in the medical community. In the courseof the visit, TIF’s representative also met with officials andmedical experts from the Russian Ministry of Health andSocial Development and discussed with them the importantissue of thalassaemia and haemoglobinopathies.

At present, there is increased activity in the area of rarediseases in Russia. TIF was invited to participate in theSecond All-Russian Conference on Rare Diseases which willtake place in April 2011 in St Petersburg. The goal of theconference is the creation and promotion of nationalprogrammes for rare diseases and TIF can push for theinclusion of haemoglobinopathies on the national healthagendas. TIF has already secured the participation ofinternational experts for the event.

VVietnam / February 2011

A Thalassaemia International Federation (TIF) delegationvisited Hanoi City in Vietnam on the 11th and 12th February2011. The delegate participated in the inaugurationceremony for the registration of the VietnameseThalassaemia Association, which was also attended by theVice Minister of Health Ass. Prof. Nguyen Thi Xuyen, the ViceMinister of Labour, representatives of the Ministry ofEducation, prominent health professionals and hundreds of

patients and parents. This was followed by a series of highlevel meetings with the national health authorities of thecountry. Goal of the delegation visit was to assess thecurrent situation and the magnitude of the problem ofthalassaemia in this country, to observe the progress that hasbeen made since the last TIF delegation visit in 2007, and todiscuss the potential draft of a joint three-year plan of actionas well as the necessary steps to be taken in order tomaterialise it. Moreover, the TIF delegation sought toevaluate the level of public and professional awareness, andthe degree of the health services’ involvement.

Indonesia / March 2011

Taking advantage of the most recent WHO/SEARO meetingand the presentation of a three-minute statement, TIForganised a follow-up delegation visit to Indonesia betweenthe 3rd and the 6th March 2011.

TIF’s delegate met with parents and patients as well as withhealth professionals, and delivered a message from TIF’spresident. Issues discussed in the meetings included thetranslation into Bahasa and distribution of TIF referencematerial at thalassaemia centres across the country and waysto promote a national prevention programme.

The delegation also met with Ministry of Health officials anddiscussed issues of implementation of a national preventionprogramme for thalassaemia and the need to establish aunified national registry. It was agreed that, based on thefindings, observations and recommendations of this as wellas the last visit of TIF in Indonesia, effectuated by one of TIF’sBoard members, a three-year joint plan of action betweenTIF and the MOH should be drafted over the next months.

TIF VISITS



TIF INTERNATIONAL CONFERENCES


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2010 saw a number of important activities organised byThalassaemia Patients Friends Society Palestine (TPFS), suchas the opening of the Amal Community centre whose aimis to influence national policies, to improve publicawareness, and prevent new thalassaemia births. A numberof meetings and lectures took place on psychosocialsupport for thalassaemia patients over the year and theAmal newsletter has started its circulation for the benefit ofthalassaemia patients. Issues 18 and 19 have already beenreleased.

TPFS has organised and co-organised a number of activitiesfor thalassaemia patients in the course of the year, amongthem the yearly Ramadan Breakfast for the benefit ofthalassaemia patients, a summer camp for thalassaemicand non thalassaemic children, a workshop aboutthalassaemia management, and TPFS’ third mass mediaeducational conference on the role of mass media insupporting education and awareness on thalassaemia andthe pre-marriage test.

AAchievements of ThalassaemiaPatients Friends Society Palestine in 2010Contributed by Anton Skafi, Thalassaemia Patients Friends Society Palestine

“The Student As A Health Educator For His Family And Community”

TPFS signed a memorandum of understanding with the Palestinian Ministry of high education to raise health awareness

about thalassaemia at schools. The goal is to fight Thalassaemia and raise awareness at 56 targeted government schools,

through a daily educational programme followed up by a government officer. This will surely be an opportunity to

strengthen the friendship between students with thalassaemia and other blood disorders and other students, and promote

empathy for the patients’ suffering, including everybody in the fight against this disease.

NEWS FROM AROUND THE WORLD

The 63rd World Health Assembly (May 2010) adopted theresolution WHA A63.12 on the 'Availability, safety and qual-ity of blood products' and thereby also requested from theDirector-General of the WHO "to provide guidance, trainingand support to Member States on safe and rational use ofblood products .. and patient blood management".

To implement this resolution, the WHO Blood TransfusionSafety Programme (WHO/BTS), in collaboration with SharjahBlood Transfusion and Research Centre and the Governmentof United Arab Emirates (UAE), organised the WHO GlobalForum for Blood Safety: Patient Blood Management on 14thand 15th March, 2011, in Dubai, United Arab Emirates. Theaim of this forum was to provide a mechanism for informa-tion exchange, fostering collaboration, involving internation-al partners in the implementation of resolution WHA63.R12

on availability, safety and quality of blood products, particu-larly on patient blood management system.

Furthermore, on 16th to 18th March 2011, a meeting of theWHO Global Safety Network has taken place, consisting ofWHO Collaborating Centres and selected Experts PanelMembers and NGOs in official relations with the WHO. Theaim was to provide a mechanism for engaging and strength-ening the interaction of such centres and NGOs, and tocoordinate WHO global/regional activities and offer supportto priority countries for blood safety.

The Global Blood Safety Network (GLBS) has also created anew Working Party on Global Blood Safety, which wasapproved by the International Society for Blood Transfusion(ISBT).

WHO Blood Transfusion Safety Programme (WHO/BTS)and WHO Global Safety Network in Dubai,United Arab Emirates



On the 30th October 2010, theRomania Association of MajorThalassaemia (APTM) organised for thesecond consecutive year the NationalWorkshop on Thalassaemia Major withTIF’s support. The event brought

together professionals, patients andparents, representatives of patients’associations from other Europeancountries, and representatives of thepress. The event combined successfullythe medical experience in clinical man-agement and treatment of major tha-lassaemia with the personal experiencein the management of the disease, theexperience of patients and of otherpatients’ associations.

The first part of the workshop wasgiven over to the medical experts andthe topics covered the clinical manage-ment of major thalassaemia and chela-tion therapy, cardiac complications in

thalassaemia major, liver complicationsand possibilities of treatment, hypogo-nadism, fertility and other endocrinecomplications in thalassaemia major, aswell as diabetes and the importance ofthe glucose test. The second part ofthe workshop was reserved for presen-tations from patients focussing on per-sonal experience and the work ofpatients’ associations in a number ofEuropean countries.

We are delighted and impressed withthe success of the event, and congrat-ulate the Romania Association OfMajor Thalassaemia on its organisation.

Second Romanian Workshop on Thalassaemia MajorContributed by Costin Radu Ganescu, President of Romania Association of Major Thalassaemia

On September 30th, 2010, more thanfifty delegates from across Canadagathered in Ottawa and spoke withone strong voice, advocating for healthpolicy on behalf of 2.7 million patientsaffected by rare conditions under theumbrella of Canadian Organisation forRare Disorders (CORD).

The patient advocates met withMembers of the Canadian Parliamentand Senators from all political spec-trums. The delegates asked MPs andSenators to support CORD by urgingthe Canadian Government to moveforward quickly on a regulatory frame-work for rare disorders and to workwith the Provincial and TerritorialGovernments on a national plan forrare diseases.

On October 1st-2nd, 2010, CORDhosted its third annual conference inOttawa.

The event was attended by more than150 participants from patient organisa-tions, government representatives,patient advocacy agencies, and thepharmaceutical industry.

The discussions and presentationsfocused on a proposed national planfor rare disorders, a dialogue on chal-lenges in addressing rare disorders,Canadian initiatives for research andearly detection, and initiatives towardaccess to diagnosis and treatment.

The conference also included fourworkshop sessions designed to educate

participants on advocacy, capacitybuilding and strengthening a patientorganisation. TIF Board member andPresident of the ThalassaemiaFoundation of Canada, Riyad Elbard,spoke to the participants on the impor-tance and the benefits of belonging toan international rare disorder organisa-tion.

Rare Disease Action Day in CanadaContributed by Riyad Elbard, TIF Board member and President of the Thalassaemia Foundation of Canada

Interested in joining TIF’s Global Specialist Nurses Network?

Please write to us and complete the relevant formto send you more information.

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National Thalassaemia Day observed in Malabar, IndiaContributed by Kareem Karassery Gen. Convener; Blood Patients’ Protection Council, Kerala

On the 14th November 2010, NationalThalassaemia day was observed atKozhikkode (Calicut) together withWorld Diabetes Day and Children Day,under the auspices of Malabar THASSociety at Port Land hospital,Kozhikkode. The Deputy Mayor ofKozhikkode inaugurated the event aswell as the new headquarters of theSociety.

The Head of the Department ofPediatrics gave the key note address,the President of the Society chaired themeeting, and the secretary of Malabar

THAS Society welcomed everyone tothe gathering. An endocrinology med-ical camp and blood and oncologycheck up were organised in the context

of this event with the participation ofexperts from the paediatric endocrinol-ogy clinic MCH, Kozhikkode. A sepa-rate psychological counselling sessionwas also conducted. Free Hepatitis-Bvaccination was provided to the threehundred or so patients and parentswho participated.

Thalassaemic children commemoratedthose who passed away with gifts ofroses. The event was successful and thepatients left with a lighter heart.

Ninava Thalassemia Society: hard-won success for thalassaemia patients in IraqContributed by Altaee Thair, Ninava Thalassaemia Society chairman

On the 9th December, 2010, NinavaThalassaemia Society in cooperationwith the health authorities of Ninavahorganised the first conference on tha-lassaemia prevention in Mosul city. Theprogram of thalassaemia preventionhas been launched successfully, and the12th November set as the national dayof thalassaemia prevention. NinavaSociety has shown great dedication

and zeal in putting thalassaemia on thenational health agenda of their coun-try, and we have been following theirefforts closely for years.

Therefore we would like to state thatwe are delighted with these develop-ments and wish to congratulate theSociety once again on their hard workand impressive results.

Priority to attend meetings and conferences •

Priority in sponsorship programmes •

Reduced registration fees •

• Authorship/contribution to educational material

• Being part of the faculty in educational events

• Participation in high-level meetings of TIF

To find out how to join, visit our website: www.thalassaemia.org.cy

INTERESTED IN JOINING THE REGIONAL(EUROPEAN, ASIAN, AMERICAN, ME, GLOBAL) NETWORK OF PATIENTS’

ORGANISATIONS AND MEDICAL SPECIALISTS IN HAEMOGLOBIN DISORDERS?BENEFITS FROM BEING PART OF THE NETWORK INCLUDE:

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FEATURE ARTICLES


Patients’ Stories

A glimmer of hopeContributed by Fathieh al Dmeiry, Thalassaemia Friends Society Palestine

Between pain and hope, reality anddreams, my pen is used to writingmany words and stories. My faith wasto be one of those important topicsthat my pen writes about, so that I tellyou of some of the events andmoments that I experienced in my lifewith thalassaemia.

Fathieh Abd al Fattah Dmeiri; that is myname. Palestinian in nationality, Ilive in Tulkarem Camp, and I am20 years old. I study electricengineering. I was bornsuffering from a hereditarydisease called thalassaemia, andI have developed many of thecomplications that it causes. Thedisease succeeded in affecting otherparts of my body and in additioncaused diabetes. That is the nature ofthis disease, and that is how it affectsother patients as well – andunfortunately this is only the tip of theiceberg.

Often I describe this disease as a beastthat charges on its prey, and leaves inits wake pain and death. That is whatthalassaemia does to me: it weakensmy body and wears me out, until itgets me to the hospital. Under theseconditions and with this disease manywonder how I cope and live withthalassaemia. My reply is always clear:being a thalassaemic, and sufferingfrom diabetes, I need to be careful, butI have the capability to adapt to these

problems, as there is no space fornegligence under these conditions.

To be able to enjoy a beautiful life, andavoid a permanent stay at medicalcentres, I can never neglect mytreatment; I must comply withtransfusion appointments, and notdelay them, as to keep a good level ofhaemoglobin. I can also never neglect

my chelation treatment, which I take 5-6 times weekly, to get rid of the excessiron that is accumulated in my body,due to the repeated transfusions. Indoing so, I avoid any complications thataccompany iron overload. It is alsonecessary to do periodic tests andexaminations to ensure the health ofother vital organs of my body. As it isoften said, “prevention is better thanthe cure”. As a treatment strategy, Inever forget to take the medicinesprescribed by my physicians, such asdiabetes treatment and vitamins, aswell as to avoid foods that are rich iniron and can raise sugar in the blood.

According to my theory, in which Ibelieve very much, what I need to live afull life, and to accommodate my

medical problems, is to keep a highmorale. The most important part of mytreatment is my love for life, and I wishto enjoy my life as much as possible, asa normal person. Staying in medicalcentres is not the solution. The correcttreatment for people like me is througha smile – a smile that overcomes theever-present pain – and facing thedifficulties of the disease with a strong

will.

In a community like mine, as athalassaemia patient, I face moredifficult conditions than thedisease itself, as many peoplelook at me with pity, judge mefor staying in bed, and label me

as disabled and useless. In doing so,they deprive me from my ability tocontribute to my community. Thisnegative outlook does not stop ordiscourage me, because I confront itwith resolve and determination, I provemyself and my capabilities, and fulfilmy ambitions. I have succeeded ingathering around me a group of peoplethat appreciate me and I forced thecommunity to hear my clear voicesaying that I have a strong willpowerand a subtle smile that not manyhealthy people have.

Last but not least, as I always say,“between pain, difficulties, andsuffering, there is always a glimmer ofhope”.

TIF Wants to Hear Your Story!

If you have a story that touches on some of theissues faced by thalassaemia patients in their

lives, send it to TIF.

Or if you know of an inspirational or influentialindividual in the thalassaemia community, whom youthink TIF should interview, let us know about it. Wealways welcome suggestions and will contact you ifyour story is selected for publication.

“between pain, difficulties, andsuffering, there is always a

glimmer of hope”

FEATURE ARTICLES

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Tribute to Vincenzo de Sanctis,Father of Endocrinology in Thalassaemia,on the event of his retirementContributed by Dr Michael Angastiniotis, TIF Medical Advisor

Over the years of its existence, the ThalassaemiaInternational Federation (TIF) has had the honour ofknowing not one but two great physicians from Ferrara. Theformer was the late Prof Calogero Vullo (whose obituary youread in the last issue of TIF Magazine), and the latter hissuccessor, Vincenzo de Sanctis. The influence of both thesepaediatricians goes far beyond the borders of Ferrara, oreven Italy, and reaches every patient with thalassaemiaacross the world.

The thalassaemia world will rememberVincenzo de Sanctis as the father of thescience of endocrinology in the field ofthalassaemia. His retirement from theArchispedale Santa Anna comes after fortyyears of devoted service. He fell in love withthe paediatric department of this hospitalsoon after his graduation from theUniversity of Bologna in 1970. During hismilitary service at the barracks of the Follo diFerrara, he began to visit the department inhis free time, and from that time onwardshe never left.

Thalassaemia drew him from his early days as a doctor, as itis obvious from looking at his first publications in 1980,which were concerned with the endocrine complications ofthe disease (hypogonadism, pancreatic function andgrowth). Through the years, he continued with research andmany publications in this and other tangent topics. In 1984,he became a research fellow at the haematologydepartment of the Whittington Hospital in London. As aresult, he had a long and fruitful collaboration with DrBeatrix Wonke, producing many publications over a periodof twenty years.

His close association with the Thalassaemia InternationalFederation has been long and fruitful. Vincenzo de Sanctishas been a regular lecturer in workshops and conferencesorganised by the Federation, and was in charge of a TIFinvestigation into endocrine complications in thalassaemia,which covered twenty-nine centres, treating a total of overthree thousand patients across the world (a study publishedin 2004). He is author of the endocrinology chapter of theGuidelines for the clinical Management of Thalassaemiapublished by TIF in 2008. He is editor, in collaboration with

TIF, of a supplement on thalassaemia in PaediatricEndocrinology Reviews on the same subject. These are but afew of the fruits of a longstanding relationship, which alsohas the character of a personal friendship. Vincenzo deSanctis is a wise counsellor to all of us at TIF office and to themembers of TIF’s Board of Directors. We are certain that Vincenzo de Sanctis has left an indeliblemark at the Santa Anna Hospital, and the thalassaemiaworld. His influence in his field is still growing and hisexpertise sought by the medical community.

For the Thalassaemia International Federation, this is not a‘goodbye’ note, but a plea to Vincenzo de Sanctis tointensify our friendship and collaboration now that he isfreed from some of his duties. We would like to congratulatehim for completing so successfully a part of his career, andinvite and urge him to continue benefitting thalassaemiawith his experience, expertise and wisdom.

Tributes and Awards for Distinguished Individuals


The 4th Regional Meeting of theLebanese Society of Hematology andBlood Transfusion, headed by Prof AliTaher, took place from the 30thSeptember to the 2nd October, 2010.The three-day meeting revisited recentadvances in the field of hematologyand blood transfusion as presented bykey international speakers.

In the course of the meeting, theLebanese Former First Lady, Mrs MounaHaraoui, member of TIF’s Board ofDirectors, was honored with an awardfor her immense contribution to healthcare in Lebanon. Mrs Haraoui’sdevotion to Lebanese patients and toher mission of improving their qualityof life remains unrivaled. Her highlysignificant contribution has resulted inthe Chronic Care Centre, which has

become an important shelter fordiabetic and thalassaemic patients andtheir families. Mrs. Haraoui’s dedicationhas helped the Centre become a front-runner in research and innovation inthe medical field, and she remains thedriving force behind the Centre’ssignificant role in thalassaemiaprevention in Lebanon, where new

cases of thalassaemia have droppedfrom fifty to five per year. Her care forthose in need and her persistence inachieving excellence mark her as anexceptional individual and theinternational thalassaemia communityis grateful for her efforts.

Award for a distinguished member of the Board of TIFFormer First Lady of Lebanon, Mrs Mouna Haraoui, receives awardfor her contribution to health careContributed by Prof Ali Taher, American University of Beirut

Join the Thalassaemia Family– Become a TIF Member!

Is your thalassaemia association alreadya member of TIF? If not, it should be!

TIF’s Members are part of a global family of patients,parents and medical professionals, and can enjoy

many useful benefits.

All members receive TIF’s publications freeof charge and can participate andcontribute to

its activities, particularly its internationally recognisededucational programme. After one year, General

Members are eligible to become Voting Membersand contribute to TIF’s global policy.

Non-thalassaemia related patientsand other organisations, as well as health

professionals and other individuals interestedin supporting the cause of thalassaemia can

become Associate Members.

Please take a moment to consider becoming amember. Each and every contribution is an invaluableexpression of support for the Federation, and allowsus to continue our work for the benefit of patientswith thalassaemia across the world.

For more details about the benefits of being a General or Associate Member, contact TIF at:

Thalassaemia International Federation PO Box 28807, 2083 Nicosia, Cyprus Tel: +357 22 319 129 Fax: +357 22 314 552or by email at: [email protected]

FEATURE ARTICLES


FEATURE ARTICLES

This year’s theme for the 8th May is two-fold. On the onehand, it focuses on health inequalities stemming from socialdivides, poverty and discrimination which indirectly causedisease. On the other hand, it touches upon the social andhealth inequalities brought on by chronic and also rarediseases.

In keeping with this year’s Rare Disease Day theme (‘Rare butEqual’), and the focus on Health Equity, World ThalassaemiaDay 2011 deals with inequality as experienced bythalassaemia patients and their families. Social and financialinequalities go hand in hand with lack of basic awarenessand prevention programmes for thalassaemia. Dire workingand living conditions are linked to lack of treatment from ayoung age, thus causing problems in later life. The high costof treatment, when not reimbursed by the State, andproblems of integration deepen the social divide, affectingthe psychology of patients and families, leading to isolationand depression. Patients are the victims of inequality in more ways thanother people. Patients struggle each day to overcome theobstacles to quality healthcare and good quality of life, towhich they have every right as patients and human beings.

Building on last year’s theme, Knowledge is Power and theinformed patient, this year we take a step further anddeclare for all to hear that thalassaemia patients deserve anequal chance to happiness and life.

The idea of the 2011 slogan – “Equal Chance toLife” – is to encourage thalassaemia patientsworldwide to fight for their basic human rightsand their rights as patients, for their voice to beheard, and their struggle to be acknowledgedby their governments. 2011 must be a year ofpositive changes, of empowerment and gainingnew ground for every patient with thalassaemiaacross the world.

We look forward to hearing about how you – our members– reflect this important theme in your 8th May activities, andto reading your stories of how you have struggled withinequality in your life.

88th May - World Thalassaemia Day 2011Combatting health inequalities:‘’EQUAL CHANCE TO LIFE’’

“Men are born equal, butthey are also born different”Erich Fromm (1900-1980)

““There is no greater inequalitythan treating people inunequal situations in the samemanner,” recently statedYann Le Cam, CEO ofEurordis, the EuropeanOrganisation for RareDiseases.

We all have the same human rights andare born equal to each other. However,some of us are born in unequalcircumstances, either due tosocioeconomic conditions or disease,and this is something we cannot forgetwhen we talk about equality. Equalitytherefore is not a simple affair of givingeveryone the same access to treatmentand work opportunities, education andfinancial stability – though these arecertainly paramount factors in ensuringquality of life for all. Some people,foremost patients with chronic andrare diseases, must tackle moreinequalities and obstacles than the rest.Therefore, special provisions must bemade for them.

Socioeconomic inequity has beenshown to indirectly cause many noncommunicable chronic diseases,through deprived living conditions, badhabits, lack of education andawareness, and lack of financialstability and good healthcare. Certaingroups of people are hit the hardest,such as ethnic minorities and migrants,children, women, the elderly, thehomeless and the unemployed, and ofcourse people who live with diseaseand disability. Segregation, racism /sexism, and social inequality within acountry and across borders aretherefore indirect but powerful causesof physical suffering and even death.

Patients with chronic and rare diseasesoften suffer from debilitatingincapacitations and differences whichset them even further apart. Theirhealth condition renders existinginequalities more severe, as the cost of

diagnosis, treatment, psychologicalsupport and medicines can becomeoverwhelming, and therapy demands aflexible and reduced work schedule.

Europe, North America (USA andCanada), Australia, certain countries inthe near East, and Japan, have such aneconomic stability and healthinfrastructure that health inequalitiesare often thought to exist only in poorregions of Africa, Asia and Central andSouth America. However, even the

wealthiest regions suffer frominequalities. In 2009, the EuropeanCommission passed a Communication(COM(2009) 567) to the EuropeanParliament, the Council, the EuropeanEconomic and Social Committee andthe Committee of the regions entitled“Solidarity in Health: reducing healthinequalities in the EU”. TheCommunication set out the problem,and defined equity in health as afundamental value and as an objectivefor the public health challenges

FEATURE ARTICLES

Special Report on Health EquityHealth Inequalities in Europe and the World

‘’Equality therefore is not a simple affairof giving everyone the same access to treatment

and work opportunities, educationand financial stability’’

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FEATURE ARTICLES


identified in the EU SustainableDevelopment Strategy. TheCommunication called forcollaboration between States, andestablished the following key issues tobe addressed: equitable distribution ofhealth as part of overall social andeconomic development, improvementof data and knowledge base andmechanisms for measuring,monitoring, evaluation and reporting,building commitment across society,meeting the needs of vulnerablegroups, and developing thecontribution of EU policies.

In spite of the earlier identification ofgrave issues of inequality in Europe, theeconomic crisis of the last year was aneye opener, and served as a trigger forseveral studies on poverty and health inEurope as in other wealthy regions ofthe world. With 2010 declared“European Year against Poverty andSocial Exclusion”, Europe rediscoveredits socioeconomic outcasts and theeffects poverty and discrimination haveon the spread of non communicable,chronic diseases.

A European Platform against Poverty isin the works and will form crucial partof the EU’s 2020 strategy. A draft

report on “Reducing HealthInequalities in the EU” was presentedon 29th November 2010 at the ENVI(Environment, Public Health and FoodSafety) Committee. The fact remainsthat Europe, considered one of thewealthiest regions of the world, has17% of its population (about eightymillion) living below the povertythreshold. The picture emerging fromother regions of the world is of coursemuch bleaker and considerable workneeds to be done and similar steps betaken as in Europe to redress theproblem.

Europe is trying to address the issuethrough the creation of the abovementioned Platform against Povertywhich will coordinate the actions ofmember states, support collaboration,and provide EU-wide rules and funding.An annual convention will allowexchange of ideas, feedback, andprogress evaluation. In a very concretestatement, the EU is proposing to lifttwenty million people out of povertyand social exclusion by 2020. Althoughthis is an ambitious goal, once setagainst the fond of the eighty millionpoor in the EU, it just does not seemenough. For Europe, this is still anunacceptable situation.

In regions with less resources and morepeople living below the povertythreshold, inequality is present in adifferent way than in the wealthiernations. Inequality for patients there ismuch more likely to lead to ostracism,extremely harsh living conditions, andearly death. Treatment is often scarceor completely unavailable, whereas inwealthier nations it may be existent butnot adequate. In rich countries,inequality refers more to the disparitiesin the quality of available treatmentand to the privileged access of the fewto a much better care.

The fact is that extreme inequalitiesand disparities in health and quality oflife are common in all countries of theworld, poor or wealthy. It is not thewealthiest countries that have thehealthiest citizens, but the ones wherewealth is more evenly distributed.

For more information on health equitysee EPHA’s (European Public HealthAlliance) website: www.epha.org/a/4368

Let us work together to combat healthinequalities around the world!

TIF’s educational booksavailable in new languages!

For downloadable PDF versions of all available languages please visitTIF’s website:

www.thalassaemia.org.cy

Or contact TIF, your national thalassaemia association or your country’s TIF Board Member to order a hard copy.

They are absolutely free for patients and parents!

UPCOMING EVENTS


EVENTS CALENDAR 2011

EVENT

March 14-15 2011

March 16-18 2011

March 16-19 2011

March 19-20 2011

April 1-2 2011

April 12-15 2011

May 11-14 2011

May 18-20 2011

May 24-25 2011

June 9, 2011

June 18-22, 2011

June 23-26, 2011

September 4-7, 2011

Dubai, AE

Dubai, AE

Tirana, Albania

Nicosia, Cyprus

Brussels, Belgium

Strasbourg, France

Antalya, Turkey

Portoroz, Slovenie

Dublin, Ireland

London, England

Lisbon, Portugal

Vienna, Austria

Manila, Philippines

WHO Global Forum for Blood Safety:patient blood management

WHO Global Blood Safety network meeting(network of WHO collaborating centres)

European School of Transfusion Medicine (ESTM) coursein Tirana on “Transfusion Medicine: development inAlbania and in Europe”

Cyprus Alliance of Rare Diseases (C.A.R.D.) Conference.Rare Diseases Conference in Cyprus

ENERCA -Training course on haemoglobin disorders:laboratory diagnosis and clinical management

6th Congress of Sickle Cell at the European Parliament

12th International Conference on Thalassaemia and theHaemoglobinopathies / 14th TIF InternationalConference for Patients and Parents

6th International INTERCEPT Meeting - CERUS

IPFA/PEI Workshop on “Surveillance and Screening ofblood borne pathogens”

16th Congress of the European Hematology Association(EHA)

ISBT Regional Congress – DOMAINE Promotion ofManual and Training Programme

5th Europaediatrics Congress

TIF Workshop (pre-conference) in Philippines

VENUE DATE


MMSc COURSE IN HAEMOGLOBINOPATHYMake a difference in your professional life

and in the lives of people affected by haemoglobin disorders!

A new e-Msc course launched in2009 by University College London(UCL) and TIF. UCL is one of the most prestigious universities in the world and one of the few to have the necessaryinfrastructure and expertise to teach through e-learning.

This course represents a uniqueopportunity for health professionals tospecialise in haemoglobinopathiesonline with minimum disruption toprofessional and personal lives.

It is designed to meet the needs of awide range of medical professionals,including :• medical graduates interested in

haemoglobinopathy (generalphysicians, specialists such aspaediatricians, haematologists,clinical geneticists, obstetricians/gynaecologists, behaviouralscientists)

• science graduates interested inmedical research related tohaemoglobinopathy and genetics

• other healthcare professionalsinterested in haemoglobinopathy(counsellors, clinical psychologists,nurse specialists and midwives)

SUPPORTED BY:

For further information, please visit www.instituteforwomenshealth.ucl.ac.ukorwww.thalassaemia.org.cy/msc.htmlor contact TIF or UCL:

UNIVERSITY COLLEGE LONDON“MSc in Haemoglobinopathy” 88-96 Chenies Mews London WC1E 6HX, United KingdomTel: +44 (0)20 7679 6060Fax: +44 (0)20 7380 9984 Email:[email protected]

THALASSAEMIA INTERNATIONALFEDERATION“MSc in Haemoglobinopathy”31 Ifigenias Str., 2007 Strovolos,CyprusTel: +357 22 319 129Fax: +357 22 314 552Email: [email protected]

Submitting photos to TIF Magazine

We are always pleased to receive your contributionsand especially photos. However, sometimes photos aretoo small or very low-resolution and we cannot usethem. To make sure your photos are print-quality,please follow these guidelines when submittingphotos:

1. Photographs intended for publication in TIFMagazine should be in JPEG or TIF format

2. To be “of printable quality” means: • High-resolution (ideally 300 dpi or more). Please

select a high resolution on your camera. (Howthis is done depends on the camera model. Youcan ask a camera shop for advice.)

• Send the original image file (even if large).Please do not re-size the photos.

• Send photos separately by email, via YouSendItor on a CD. Please do not insert photographsinto word or PDF documents.

3. All photos should have captions – i.e. a short textexplaining what is happening the photo and whothe people featured in the photo are.

4. It is the responsibility of the person submittingphotos to ensure that any person(s) featured inthem have given their permission to publish thephoto. Please make sure any patients, parents orother private persons featured in your photos haveagreed to their publication.

Because of the technical nature of some of theseguidelines, we recommend that any person entrustedwith taking photos at official events checks with aprofessional (e.g. a photographer or a camera shopassistant) how to adjust their camera’s settings.

Thank you for following these guidelines!

TIF Magazine - issue 59

Documents

Transcript of TIF Magazine - issue 59