2010 RDD Campaign Report

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Report on Rare Disease Day 2010 Campaign

http://ziuabolilorrare.wordpress.com , http://anbraro.wordpress.com

www. RPWAomania.ro , www.rarediseaseday.org , www.bolirareromania.ro ,

In Romania, the Romanian National Alliance for Rare Diseases prepared forthe largest Rare Disease Day commemoration yet, since we started with theevent in 2008. For the third year, we have the support of Genzyme and ourown resources: volunteers, Medcal Universities, Romanian Genetics Societyhospitals and the RONARD network.
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The newly formed National Committee on Rare Diseases, made up of patientorganizations and specialists as been hard at work planning eventsthroughout the country and working on the National Plan for Rare Diseases.

The National Plan includes new personalized services for patients, support

for research projects, creating a network of Centers of Reference, andincreased access to orphan drugs.

This year events will be held in cities across the country including:Bucharest, Timisoara, Cluj-Napoca, Iasi, Craiova, Zalau, Targu Mures,Slobozia, and Oradea.

The goal of this year is to have the National Plan for Rare Diseases includedin the National Strategy for Health by the Romanian Ministry of Health. Inreaching this goal, we aim to spread awareness about the situations of raredisease patients to groups ranging from school children to specialist medical

professionals.

We wish everyone around the world success in their events this year andhope that Rare Disease Day will bring us closer to the goal of better care forpatients with rare diseases.

National Alliance for Rare Diseases Romania - ANBRaRo has celebrated theInternational Day of rare diseases in Romania on February 28, 2010 for theentire month but, more activities were organized in the week 22-28 in:Zalau, Oradea, Cluj, Baia Mare, Bistrita, Alba, Brasov, Targovise, Sibiu, Iasi,

Tg. Mures, Ialomita, Campina, Bacau, Timisoara, Arad, Resita and Bucuresti .

The theme this year is: "Rare diseases - a public health priority",priority is research on rare diseases.Our campaign slogan:

Healthy and sick, partners for life!

Rare diseases are chronic, progressive, degenerative and often life-threatening, with high levels of distress. Today there is an appropriatetreatment for most rare diseases. The world's approximately 8,000 knownrare diseases, affecting 75% of them children. People with rare diseasesoften have common problems such as delayed diagnosis, lack of qualityinformation, lack of adequate care and inequality in access to treatment andcare. Although the diseases are rare, patients are few. The paradox of rarediseases is precisely the fact that diversity and large number of rare diseasesand different causes expertise is rare. At European level there are over25,000,000 patients with rare diseases, of which over 1,000,000 are inRomania. Most are diagnosed, and expected support of us all.


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Our Alliance is currently working on completion of the National Plan for RareDiseases, which we hope to be included in the National Strategy for PublicHealth in Romania.

Rare Disease European Day on February 28, 2010, is an opportunity to

celebrate community diversity of rare diseases in Romania and abroad andmake their presence known among us.And we invite all who may be involved, participate and organize local eventsto celebrate the marking and days.

www. RPWAomania.ro , www.rarediseaseday.org , www.bolirareromania.ro ,http://ziuabolilorrare.wordpress.com , http://anbraro.wordpress.com

Rare Diseases Day Campaign 2010 in Romania

Story of the Week, My Story 01.02.2010-28.02.2010

Media outreach campaign. Stories about rare diseases from the perspectiveof patients or specialists are presented to the public in blog posts, on radio,and in written press.

More information: http://ziuabolilorrare.wordpress.com/

Timisoara Campaign in Schools 12.02.2010

Rare disease volunteers (medical students from the University of Timisoara)will visit local schools to make presentations and give lectures on rarediseases to primary and high school students.

More information: http://www.umft.ro/newpage/

Conferences, Discussions at Children's Hospital Louis Turcanu 12.02.2010

An informational campaign for doctors, psychologists, and other specialistson rare diseases will take place at Children's Hospital Louis Turcanu in

Timisoara.

More information: http://www.spital-copii-timisoara.info/index.php t - 1

Play decide session at APWR 13.02.10

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Rare Disease Lesson Plans 15.02.10- 28.02.10

Teachers in Zalau will be implementing lesson plans to inform students onrare diseases and disabilities during a two week period in February. Theselessons include interactive components in order to open up the minds of

young people to the struggles that patients with rare diseases face and thestrength of their character. After all, 85% of rare diseases affect children.

In Romania, an important target group of Rare Disease Day 2010 is primaryand high school students. These lessons are another community basedoutreach effort for that group.

Ability Workshop-Zalau 17.02.10 19.02.10

The Romanian Prader Willi Association and Caritas Catholic Organizationhave partnered together to host an experiential workshop for students at theCorneliu Coposu School in Zalau. The day will include opportunities forstudents to experience various disabilities with experiential activities,ranging from motor impairments to visual impairments. The goal is forstudents to realize that having a disability does not mean that a person isnot talented in many areas. The idea for these workshops comes from AbilityPark, formerly operating in Budapest.

Press conference at Caritas Catolica Association

More information: http://www.caritascatolica-oradea.ro/index_en.php

Opening of the campaign in Zalau -22.02.2010

The kick off of Rare Disease Day will take place in Zalau and begin with amarch through town of rare disease stakeholders to raise publicawareness. The day will culminate in a show at the Local House of Culture,which will include presentations and remarks from patients and localauthorities, the viewing of the rare disease day 2010 television commercial,and artistic performances by local community groups.


22.02.2010 - Information session for young people in secondaryschools and universities

Timisoara Street Campaign 22.02.2010

Volunteers in Timisoara will lead a street campaign aimed at interacting withthe public about rare diseases. 3 tents will be located in the center of
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Timisoara where medical students will hand out information and brochureswhile engaging the public about their knowledge of rare diseases.

More information: http://www.umft.ro/newpage/

Conference for Family Doctors on Neuro-Muscular Diseases 23.02.2010

A daylong conference in partnership with ACASA Rehabilitation Hospital willbe aimed at informing Family Doctors in Romania on Neuro-MuscularDiseases; how to identify them and how to assure quality care to theirpatients.

More information: http://www.fundatiaacasa.ro/en/index.php

Book Launch 23.02.2010

Releasing of a story book containing 10 stories about children withdisabilities or rare diseases aimed at civic education students in Romania forthe purpose of sensitizing them to the fact that having a rare disease doesnot define a person.


Symposium on rare diseases Carei, Satu Mare Wernig HoffmanAssociation , 24.02.2010.

TV Antena 1 Live healthy Dr. Corin Badiu will speak about rarediseases on 24.02.2010;

Symposium on rare diseases at Hotel City Plaza - organized by Mrs.Prof. Dr. Paula Grigorescu Sido, Cluj- Napoca.

Rare Diseases Conference Rare Diseases more than appearance ,IOMC, Bucharest 25.02.2010

National Conference on RD and a press conference Bucharest,

26.02.2010, in partnership with CNSMF, Medical Faculty, Bdul EroiiSanitari, no. 8, addressed to patients and professionals;

Round Table Discussion Timisoara 28.02.2010

Televised round table with medical personnel, political and cultural figuresfrom the Banat region will focus on their involvement in rare diseases.
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Spot TV, audio; media campaign and sharing information materialsall over the country;

Story of the Week

To begin with we shall share a series of weekly stories aboutpatients with rare diseases in Romania and those who care forthem: parents, professionals, educators, colleagues, etc..

Starting the first day of February, the National Alliance for RareDiseases National campaign launches "healthy and sick, Partners forLife", the International Day of rare diseases, officially marked thelast day of February.

We think it has to be known by the general public because they aretrue heroes.

Life with a rare disease or a person living with such a life is aconstant battle for surviving. First test gave life and only then toldthem which lesson was actually ....

Example:

1. LESSONS FOR LIFE

Motto: "Just the life that we live for othersWhat is a life worth living.Albert Einstein

The door opened and a wheelchair submitted by the middle office, Igot up to say hi and asked what could help her, although apparentlyvery fragile and severely affected by the disease, he shook hands whilestrong tears his face flush, my hand held tight good few minutes afterthe tears were over, he answered, more difficult but with a strongvoice-"with a kind word ...". It happened I got more time in mind, is one

of dozens that have deeply resonant with me over the last 4 years. Myinvolvement as a volunteer in activities Prader Willi Association andNational Alliance of Patients with diseases brought me in to a lot of challenges and helped me see more clearly and to understand thesituation from both "camps".

Today rare diseases are a major concern for public health and start tobe a priority for health programs and research. But 80% of rare
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diseases are genetic diseases and is the concern of every day thedoctor trying geneticist by training and his dedication to helpingpatients and their families. Because of the very large number andcomplexity of their diagnosis and treatment of rare diseases is oftendifficult process, which involves constantly updated with professional

knowledge, much patience, depth and willingness to work as a team.As a doctor you are concerned about Do not let any detail that mighthelp you find the correct diagnosis: detailed family history, clinicalexamination of the patient, all medical events and therapeuticpatient's life. Then follows that diagnostic decisions to guide you, thatgenetic testing would be needed, what therapeutic management planto choose. Often these steps are not at all easy-e first time you see apatient with a particular rare disease and you must document verywell, the disease has various forms and manifests itself differently indifferent generations, genetic tests can not be made in Romania or

very expensive, it takes more consulturi and investigations that willinvolve collaboration with colleagues from different specialties.Geneticist physician must then complete medical act Geneticcounseling, establish and communicate patient and family, the risk of recurrence of disease and how to reduce it. You must find the rightwords and make sure that the information they give is well understoodand will help the patient and his family. It's wonderful to hear:"although doctors did not know that there is genetic, your discussionwas a welcome lesson in genetics, after many years I grasped what mycondition. But beyond the professional, all these years there have, forme, the true lessons of life.

Sigmund Freud said that every man you meet us in our way is superiorto anything and we must try to learn that "something" on each. RareDiseases campaign message this year-"A disease is rare when itaffects you you" - says a lot in terms of patients. The absence of aclear diagnosis and appropriate therapy, late diagnosis, countlessconsulturi join emphasizes the feeling of isolation and suffering.Courage to go forward, not to abandon hope, come slowly realize thatwhen they are not alone, that they listen and help. "A good word" maymatter more than any treatment, especially when there is notreatment to cure. Many families have chosen intuitive way of dealingwith their child's illness, not knowing any diagnosis, nor how theyshould care. They have done well often have wrong many times, butcertain is that the progress their children are largely due. The Bible is apassage that says that having faith is believing in what you do not seeand the reward for this faith is to see what you think. Many parentswere obtained, with patience, dedication and a lot of love, exceptionalprogress where no one thought could be, despite the severe diseasewithout curative therapy. Youth association muscle and


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neurodegenerative diseases, and certainly not just her business cardsare the parents and their families-although have never and are living ina cart with wheels, their example of determination, will and courage iscertified how they talk to others, the results of their work, the facultycompleted diplomas.

Prader Willi Association project in Romania and the ACASA Foundationfor genetic counseling and psychological recovery and patients withrare diseases, to facilitate a closer contact between professionals,patients and their families. With patience and understanding, of warm,transparent and balanced center Home, I got together, specialists andpatients, to get over the difficulty to talk openly about real issues andfind solutions. All patients and their families to thank for the privilegeof learning from them the real value of each day, each smile, eachcollection of hand. Together with colleagues in the design center staff and home, I built, I opened some doors and I got new stages with these

rare people. Paraphrasing him on Kafka, "as long as they do not stop toclimb, stairs will not end, in our steps that goes up, they will multiplyindefinitely.

May be finished one year out big snow flakes falling quietly withdancing to the beat of his stride Hrusca Green Heaven. With hope thatwe will find together the joy of being, the wisdom of giving andreceiving, the power to accept, willingness to open new beginningevery day just continuing what is past, I wish you all Merry Christmasand New Year full of achievements!

Dr. Cristina Skrypnyk Genetic MDVoluntary RPWA

My story begins 33 years ago. Both went from my diagnosis of betathalassemia major. We started with transfusion of blood at 4 years old ...every 3 weeks to 7 years, when I had surgery the spleen.My luck was that I met a great doctor, Prof. Mrs. Margit Serban. A man with ahuge heart who helped me and helped me a lot today.

Those with rare diseases are isolated people in our society. I must say I waspointed in the street or tram batranele be moved away from me for fear of being contagious. The events were succeeded rapidly and years passed. Atage 23 years, I got health care. Since then, my life has had ups and downs.3 years ago I was very seriously ill. I had a bag of pus in the liver of 4 litersand 12 node-infected brain. I spent 6 months in semicoma, with righthemiparesis. For 8 months I made 3 combined antibiotics and here I amtoday again among you, telling you that pass by every day.I come from a family where the mother had suffered most. She died and roseevery day with me, of her face. 7 years ago made a cancer was operated,


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irradiated, treated with chemotherapy.I can tell you that living today because the same lady doctor Serban. She isthe lady who was, besides his mother, he protected life.A wise sea that is my mother said one day:"God gives us just as we can go ... no more and no less"

Today I am 33, working at Children's Hospital "L. Turcanu "as health care andlife tortured me sad that I took her sometimes but I enjoy the wonderfulpeople that I met here. And I am glad because I am a small part insignificantamong them ....

The story begins 44 years ago ... Just, an old story, almost an ancientone ...

Only child with no history about rare diseases ...

In 13 years I was diagnosed with progressive muscular dystrophy, facioscapula humerus angle, disability and degenerative disease. And nocure ...

Collapsing an entire universe for me and my family and began duringdifficult years in which must not give up ...

In 1984 graduated from high school to date, but I have not attendeduniversity because of illness, because I realize that makes the diplomaafter graduation, since I could not go to work ... the same time we arestopped taking medication because found that, in my case, it ... Iaccelerated the degenerative process

Even then and even now I have asked "Why is this happening to me?",And I preferred to accept the de facto situation and to focus on future,not past.

Then came 1989 and I brought the issue, that I could say I was workingand helping others, including my parents. What can be more gratitudefor someone convicted of being forever home care, family support andto reach not only?

I will detail what we did and are professionally and socially, it's overand are about stupid with free time .., and I will not say just how I gotyou to write here ...

The disease has advanced, in 1996 using a wheelchair, but still in 1996we started to be increasingly more active, the wheelchair was not aceiling, but an opening / Total Freedom, a launching pad ...


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However, I was not turned ... For years I searched for her everywhere,but it was well hidden ... until 2003, in the fall, when I found one onCristina. On the net ... We first met on December 20, on February 14 Iasked my hand and on June 5, 2004 I became the official U.S. ...

Not so you get what's next? I began to concern us we can do to makesure that I will not send my genetic modification "Winnie" that we wanthim ... and we have interest, and we were interested, and all the"experts" in Bucharest us have all discouraged, in fact tried in vain ..because they said we needed DNA testing is done only in the U.S. and,anyway, it does get us struggle so ..

But the eternal "but" ... one day I read on a site, whose name deservesmention here because it changed everything (www.eva.ro), an articlesigned by a genetic doctor lady, Cristina Skrypnyk Oradea . Also a"Cristina" ... I started a search on the net and found e-mail address, I

wrote, and by Christmas 2005 I received an extraordinary response:not only that the test can be done at Wrzburg, in Germany, as well asMrs. Doctor can help with preliminary tests and final test! So the job!We started 2006 with a vengeance .. and I sent in Wurzburg, allsupported by Cristina (lady doctor became the new 'Cristina' ...), myDNA to determine the exact mutation. The result came in March,identified the place, and everything I had to do was ... you know ...August brings us the news: we'll be parents! For that emotions do notleave us, a hematoma appeared decidural threatening pregnancyevolution and we stress about 3 months ... In fall was plannedamniocentesis and sending all the Wurzburg sample to face the two

DNA sites but, as the Romans, practitioner, clinic chief, etc., of allmaking late amniocentesis saying it's too early, while the German wasintrigued of late ... So we invited them and do everything there for free(danke sehr Herr Professor Kress!) ... said and done, on November 28,2006, at 9, go by car to Wurzburg, and the next day at 13 I was there,going almost nonstop for more than 1,000 km ... I have never doneamnio, but placentocenteza and we went home full of emotions andthoughts about the result ... result that Santa brought us: the child waswell! Joy had no edges, no our gratitude to Cristina and the entire teamwho made it to help us, without whom we would not have been threenow and very happy!

On April 25, 2007 came Theodor Cristian, stork landing was perfect ...who were godparents of baptism? Who do not you already guessed?Cristina, Alex and Stefan Skrypnyk ...

Now we are fast approaching 3 years old, are hyper energetic, knowmore, do more ... and crazy ... and enjoying every moment they spend


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together with our minunelul (NASA tells it ...), only without grace or thewho have helped the progress of genetic medicine ...

You know, friends, "yesterday" is history, "tomorrow" is an unknown,but "today" is worth living to the full! As we do ...

My name is Aurelia and I am from Bucharest and I would like to share a littlebit about my life. I got married when I was 19 years old and when I was 25years old; I had my third child, a baby girl to join her two brothers. I thoughtthat there was nothing more I could want out of life. When my daughter wasonly two days old, her pediatrician called to ask if something had happenedduring my pregnancy. I did not understand a word that the doctor wassaying. Then he came out and said it, Mom, your daughter has someproblems. He told me my daughter had motor weakness and was notfeeding properly. I was shocked and fell down. I told my husband and Idecided that when I left the maternity hospital, we would go to find the bestgeneticist that I could. My daughter had pneumonia 6 times before she was 6months old. I decided to treat Maria normally, and asked her brothers to dothe same. I bought books on massage, gymnastics, and speech therapy. Iwas determined to help Maria overcome her developmental delays. At oneyear and three months old, she could not hold her head up, could not standup without help and was sleeping a lot and eating very little. At two yearsand nine months she could stand up alone and I cannot describe the joy thatbrought my husband and me. At four years old, the feeding problems turned

into weight problems and Maria was labeled as obese. We started locking thekitchen, warned others not to give Maria food, and sent her off to regularschool. She finished 8 th grade and did a lot of sports with me. At 18 years old,Maria developed Type II Diabetes and began taking insulin. Finally, when mydaughter was 28 years old, we had a diagnosis; Prader Willi Syndrome. Whyhad it taken so long to diagnose my daughter? Why hadnt any of thespecialists I took her to figured it out? These are questions that will remainunanswered. That same year, Maria developed a serious staph infection andneeded to go on kidney dialysis. Her health conditioned worsened and shepassed away. In memory of Maria, we all need to be involved with helpingchildren with rare disorders.

I wanted my daughter to be different and so I named her Melita. Shortly aftershe was born, she was diagnosed with Epidermolysis bullosa (E.B.), a rareskin disorder which does not have a treatment. Young people with E.B. arecalled butterfly children because their skin is extremely sensitive, like thewings of a butterfly. Also, E.B. is considered terrible disease because unborn


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children suffer in the mother's womb before they are born; like the butterflylarvae, which struggle alone in the cocoon to escape and enter the world.E.B. prevents children from having a happy childhood and a normal, adult,life. While my family was lucky to receive a quick and direct diagnosis, mydaughters condition has no treatment. I refuse to accept the lack of treatment for my daughter and continue to search for answers and hope thatsomething can be done. Some glimmers of hope come from the supportoffered by others suffering from the disease in Romania. Also, finding otherpatients with rare diseases in Romania helped us to feel that we were notalone. We were able to join the rare disease community that shares ourstruggles and fights for similar objectives like the inclusion of more orphandrugs in the National Health Strategy by the Romanian Ministry of Health. Ihope for more sunny days and a brighter future for my daughter.

I am an ordinary man, not anything special. At 50 years old, I feel youngerand more open to change. I was diagnosed with Myasthenia gravis when Iwas in college, studying to become a cardiologist. Myasthenia gravis is a rareneuromuscular disease and autoimmune disorder that leads to muscleweakness and extreme fatigue. I was able to become a cardiac surgeondespite my condition until one day, at age 41, I was forced to make adecision amongst my worsening health problems. I never wanted to put oneof my patients in danger and so I chose to leave. It was the hardest choicethat I ever made before in my life. Being a doctor was more than a

profession to me, it was who I was as a person. After some very hard times, Idecided to found a patients organization for the other 2,000 people affectedby Myasthenia gravis in Romania. I wanted to offer support to other patients,who, like me, struggle with: muscle weakness, paralysis in some cases,intermittent worsening of symptoms, and indifference on the part of otherswho do not understand our situation. We must fight to be understood andaccepted. I have learned more about how to live with my situation from otherpeople with Myasthenia gravis, than any doctor.

My name is Andrea and I am fouryears old. When I was very little I wassick and had to have surgery on myheart twice. Dr. Vanini and a team of specialists operated on me in Cluj-


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Napoca. I was too small to remember, but my parents told me about itand I have a scar on my chest. Now I am okay, but I have to visit thehospital in Cluj with my parents, where the doctor can look at my hearton a special machine and hear how it beats.

Two infokiosks were purchased, one is located in Zalau, inside City Hall andanother inside the Children Hospital "Louis urcanu" in Timisoara. Theinfokiosks offer information about serious medical conditions, treatments andabout Prader Willi Associations NoRo project.

The info chiosks were acquired through the "Partnership Norwegian -Romanian for Progress in Rare Diseases, funded by the NorwegianCooperation Program.

On Saturday February 13, 2010, RPWA organized a session of Play Decideon the topic of neonatal screening. Game instructions, game cards, game

board and other details can be found at: http://www.playdecide.eu

The goals of the game:- To clarify your views- Try to compromise with other group members- To make your voice heard in Europe

The game consists of 3 phases: an information (clarifying their opinionsabout the topic, reading and choosing cards you feel are most relevant), adiscussion (on proposed, with cards of problems) and in the final stagereflects on group issues and reach consensus, formulating a response group.

Conference for family doctors, ne uromuscular diseases,Zalau, 23.02.2010

We held a conference for family doctors in partnership with ACASAFoundation, The Doctors Colegium Salaj, and the Salaj County EducationInspectorate (for launching the book) and financial support of Genzyme. Thetheme of neuromuscular diseases brought together 110 doctors and 45teachers.

Conference for family doctors Bucharest -26.02.2010

During the conference on 26 th of February a mother of a young girl with PWSwho died last year made her story public.

She was a child of 28 years, when she took off to heaven. It was amiracle that she remained so long with us. We are talking aboutMary, who could have had the chance of a better life if doctors had
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correctly given us a diagnosis in her childhood: no one knew shehad a rare disease until it was too late

Millions in Romania could be in this situation. Please support patients'associations. Only a few hundred cases of rare diseases are diagnosed.

Press coverage: http://ziuabolilorrare.wordpress.com/

TVR1 presented a story on Rare Disease Day along with Dorica Dan president of RPWA and RONARD and Dr. Razvan Chivu from Ministry of Health who discussed Rare Diseases as the Theme of the Day.

For Rare Disease Day, 89 participants attended the conference organized inpartnership with National centre for Study in Family medicine and Ministry of Health. Financial support for printings and organizing activity were made byGenzyme.

Rare Disease Day is celebrated on February 29, one rare day that"happens" only once every four years and therefore illustratesthe concept of rarity. This year it will be celebrated onFebruary 28, 2010.

The motto for Rare Disease European Day of 2010 is "healthy andsick - partners for life"

Since 1999, the European Union took steps to work for rare diseases and to

fight against the impact they have on patients lives, and made of rarediseases a priority in public health programs. In recent years, severalMember States have developed national plans for rare diseases. The NationalAlliance for Rare Diseases is working on completion of the plan and theproposal for inclusion in national public health strategy.

International Rare Disease Day is an annual event to raise awareness of these diseases and their impact on the lives of patients and reinforcing theirimportance as a public health priority. Rare diseases are named in order tohave a lower incidence of 5 cases per 10,000 persons. These conditions areextremely varied, can affect any organ or system and can occur from birth to

adulthood. The most common cause is genetic (85% of the approximately 7,000 rarediseases known to date). Along with rare genetic diseases there are anumber of infectious diseases, cancer and neuro-degenerative diseases.Patient with a rare disease is an "orphan" of health systems, often without adiagnosis, without treatment, without research, therefore no reason to hope.
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Between 6000 and 8000 different diseases have been identified, affecting 25million European citizens. Patients with rare diseases and their families areparticularly isolated and vulnerable. Life expectancy of patients with rarediseases is significantly reduced and many have disabilities that are thesource of discrimination and reduce or destroy educational, professional and

social opportunities.Rare diseases research is fundamental, it represents hope for millions of patients for which no treatment exists today. Also, research of rare diseasesis rare. Lack of specific health policies and scarcity of expertise leading to adelayed diagnosis and difficulty in accessing care. National health servicesfor diagnosis, treatment and care of patients with rare diseases differsignificantly in terms of availability and quality. European citizens haveunequal access to health services and orphan drugs.

Together in the world of innocenceA book launch party for "Together in the world of innocence", took place atthe Avram Iancu School in Zalau. The book brings together 10 true storiesmeant to help children to accept others, or how to behave in a givensituation from their peers. The authors of the book are Florica Horincar,

Theresa Stoica and volunteers of the Romania Prader Willi Association, whoworked with disabled youth and class. "The teachers who wrote this bookhave tried to show us that children's lives at school or in society,relationships between children is an important way to know better, toappreciate life situations, decisions taken by others, and opportunity to beinvolved when needed, "said Dan Dorica, president RPWA in the openingspeech. Book illustration was made by Dan Marius Stefan, who served in theHandicapped Society. According to organizers, the book was written inRomanian, English and because it wants to promote themselves and atEuropean level. At the end of the event was supported by a brief artistic highschool art students "Ioan Sima" Zalau. Launch of the campaign was part of International Day of rare diseases, launched by the National Alliance for RareDiseases and Prader Willi Association of Romania.Rare Disease DayBianca item BaicanFebruary 23, 2010

Alzheimer's disease, Reye's syndrome, Still syndrome, Graham, ZollingherEllison syndrome, Prader Willi Trenone clipper or Crohn's disease ... Thediseases have some weird names, defining only a small number of the nearly6,000 generic disease called "rare." And 75 percent of them affectingchildren. With a motto "healthy and sick - partners for life" campaigndedicated to the International Day of rare diseases began yesterday with amarch Zalau of rare diseases, which was attended by dozens of people.National Alliance for Rare Diseases and Prader Willi Association yesterday


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launched Romania, Zalau, campaign dedicated to the International Day of rare diseases, with a motto "healthy and sick - partners for life." And in thisyear's event theme is "Rare diseases: a public health priority." "Thecampaign is to raise awareness on rare diseases and their impact on thelives of patients and reinforcing their importance as a public health priority,"said Dan Dorica, Prader Willi Association and president of the NationalAlliance for Rare Diseases. The campaign launch took place yesterdayafternoon at the Culture House of Unions, and today, at 13.00 in room AvramIancu Hall Zalau conference will be held for family physicians, following as at15 30 to be released book "In the world of innocence", a book with 10 storiesthat could be true. "We hope the book will be read by people with disabilitiesto be more easily accepted by all of us," said Dan Dorica. At European levelthere are over 25,000,000 patients with rare diseases, of which over1,000,000 are in Romania.Mars and show dedicated to rare diseaseshttp://www.romedic.ro/mars-si-spectacol-dedicat-bolilor-rare-0N17337

Around 300 young people from Salaj, with placards with the names of rarediseases, marched on Monday, accompanied by music band 'Promenade',Zalau, trying to raise awareness on rare diseases.

The action was organized by Prader Willi Association in Romania (RPWA), inpartnership with the National Alliance for Rare Diseases, the InternationalDay dedicated to the campaign of rare diseases, celebrated each year onFebruary 28.March was followed by a show that was held at Culture House of Unions, andthat included moments of music and dance, but also presenting plays thatare part of an unprecedented volume, with 10 stories about children withdisabilities or diseases, gathered under the title "Together in the world of innocence '.'These are two stories written by teacher, in Zalau and Treznea, children withrare diseases. They are told stories that could be real, 'said Dorica Dan,president RPWA Romania.International Day dedicated campaign of rare diseases will continue Tuesdaywith a conference for family physicians on neuromuscular diseases and thebook launch said stories.In the European Union, a disease is considered to be rare if it occurs in lessthan five in 10,000 people. Worldwide, approximately 8,000 known rarediseases affecting 75% of these children. Diversity and large number of rarediseases is that different expertise is rare. At European level there are over25,000,000 patients with diseases, of which over 1,000,000 are in Romania.

SALAJ: MARCH AND SHOW DEDICATED TO RARE DISEASES ________________________________________

Around 300 young people from Salaj, with placards on which were listed the


17/17

names of rare diseases, marched on Monday, accompanied by music band'Promenade', in Zalau, in an attempt to raise awareness on rare diseases.

The action was organized by Romania Prader Willi Association (RPWA), inpartnership with the National Alliance for Rare Diseases, as part of International Day dedicated to rare diseases, celebrated annually on 28February.

The march was followed by a show that was held at Culture House of Unions,which included music and dance moments, but also presenting plays that arepart of an unprecedented volume, with 10 stories about children withdisabilities or diseases, gathered under the title "Together the world of innocence '.'These are stories written by two teachers, in Zalau and Treznea, childrenwith rare diseases. They are told stories that could be real, 'said MondayDorica Dan, President RPWA Romania.International Day dedicated campaign rare disease will continue Tuesdaywith a conference for physicians on neuromuscular diseases and the booklaunch said stories.

The European Union is considered a rare disease that occurs in less than fivein 10,000 people. The world's approximately 8,000 known rare diseasesaffecting 75% of these children.Diversity and large number of rare diseases and different causes are rare

expertise. At European level there are over 25,000,000 patients with rarediseases, of which over 1,000,000 are in Romania.

2010 RDD Campaign Report

Documents

Transcript of 2010 RDD Campaign Report