MPE AGM 2015 - Agenda

24-26 APRIL 2015DUBROVNIK, CROATIA

MYELOMA PATIENTS EUROPEANNUAL GENERAL MEETING 2015

Dear friend

On behalf of the MPE Board and Staff, I would like to welcome you to our Annual General Meeting 2015.

As President of MPE, I am proud of presenting our key successes achieved over the last year, such as a steadily growing membership, the employment of a second key worker, and numerous projects which we have developed in the interest of the myeloma community, especially patients.

Currently, we are witnessing a new scenario in the fight against myeloma. The development of new therapies offer hope to the thousands of myeloma patients over the world. The partnership among the scientific community, the healthcare professionals and the patient community is starting to show results and today, more than ever, we are closer to our goal: finding a cure for myeloma.

However, in a complex and changing political and economic scene across Europe, we also find new challenges and barriers. Committed to our mission of achieving the best possible research and equal access to the best possible treatment and care, MPE has planned a set of activities for the weekend, which will provide our members with the tools and knowledge they need to achieve change through strategic advocacy in their own countries.

I sincerely hope that the MPE AGM 2015 meets your expectations, and that we will continue working together for the benefit of the myeloma patients we represent.

With best wishes for success,

Dr. Sarper Diler MD, PhD, CHTCPresident of Myeloma Patients Europe

Dr. Sarper DilerPresident of MPE

MPE AGM 2015MEETING AGENDA

Thursday, 23 April

20:00 Informal dinner at Rixos Libertas Hotel

Friday, 24 April

08:30 - 11:00 Sponsor meeting (with invitation only) Meeting room: Levantera, 9th floor

13:00 - 14:30 Lunch

Regional Symposium

Meeting room: Mistral, 9th floor Facilitated by Kathy Redmond

17:00 - 17:15 Welcome & Introductions Sarper Diler, President of Myeloma Patients Europe

17:15 - 17:40 An introduction to the European Atlas of Access to Myeloma Treatment Ananda Plate, Operations Manager of Myeloma Patients Europe

17:40 - 18:05 Best practices: Access in the region from the patient perspective Mira Armour, Execute Director of Mijelom CRO, Board Member of Myeloma Patients Europe

18:05 - 18:30 Best practices: Access in other parts of Europe Kate Morgan, Senior Policy Officer of Myeloma UK

18:30 - 18:45 Coffee break

18:45 - 19:30 Panel discussion with regional stakeholders

19:30 - 19:45 Conclusions, recommendations and end of session

20:00 Dinner at Rixos Libertas Hotel


Saturday, 25 April

Masterclass

Meeting room: Mistral, 9th floor Facilitated by Kathy Redmond 08:00 - 08:15 Welcome & Introductions Sarper Diler, President of Myeloma Patients Europe

08:15 - 09:45 Workshop: Stakeholder Management Kathy Redmond, Redmond Consulting


10:00 - 11:30 Workshop: Health Technology Assessment & Reimbursement Elena Nicod, Research Officer at the Department of Social Policy, LSE Health Hans Scheurer, Chairman of Stichting Hematon

11:30 - 11:45 Coffee Break

11:45 - 13:15 Workshop: Marketing authorisation Nathalie Bere, Patient Relations Coordinator of the European Medicines Agency Maria Mavris, Patient Relations of the European Medicines Agency Alfonso Aguarón, Project Manager of Myeloma Patients Europe 13:15 - 14:15 Lunch

14:15 - 15:45 Workshop: European Atlas on Access Treatment Marta Ballester, Project Coordinator of the Avedis Donabedian Research Institute Ananda Plate, Operations Manager of Myeloma Patients Europe


16:00 - 16:30 Conclusions and End of Session

16:30 - 17:15 EMA initiative on risk benefit analysis Nathalie Bere, Patient Relations Coordinator of the European Medicines Agency Maria Mavris, Patient Relations of the European Medicines Agency

18:15 - 20:00 pm Dubrovnik sightseeing tour

20:00 pm Offsite dinner


Sunday, 26 April

Annual General Meeting (MPE members or with invitation only)

Meeting room: Levantera, 9th floor

09:00 – 09:15 Welcome and opening remarks

09:15 – 10:00 Presentation of 2014 Financial Report, approval of 2015 Budget, appointment of Auditor

10:00 – 10:45 2014 Activity Report and 2015 Activity Plan

10:45 – 11:15 Amendments to MPE Constitution

11:15 – 11:45 Coffee break

11:45 – 12:15 Welcome/presentation of new member organisations

12:15 - 12:30 AGM 2016 proposal

12:30 – 13:00 AOB

13:00 - 14:00 Lunch / Departures as per individual itineraries

Board Meeting (Board members only)

Meeting room: Scirocco, 9th floor

14:00 - 18:00 pm Board meeting

For any further questions, please contact Alfonso Aguarón and Ananda Plate at [email protected]

MPE AGM 2015SPEAKERS BIOS

Alfonso Aguarón Project Manager, Myeloma Patients Europe

Alfonso has recently joined the MPE team as Project Manager.

He has received training in IT engineering and until 2009 most of his professional career has been developed in a high-tech R&D multinational automotive company.

After being diagnosed with Hodgkin’s Lymphoma in 2008 he decided to get involved in patient advocacy, first as a volunteer and later on as a professional, with the aim of deploying the use of new technologies in this area. He was involved in Spanish patient groups of haematology and oncology, first as IT Manager and since 2013 as International Affairs Manager.

He has been involved in many patient networks in a national and an international level.He speaks Spanish and English.Alfonso has been working mainly from Madrid for the last five years. He is currently based in Madrid.

Mira Armour Executive Director, Mijelom CRO & Treasurer, Myeloma Patients Europe

Mira is Treasurer at MPE and Executive director MijelomCRO.

Her mother was diagnosed with multiple myeloma in 2000. There was no easily accessible information on this in the Croatian language so she started taking part in patients’ info days in the UK. This inspired her to establish a support group in Croatia. As a group of individuals in 2006 they became members of Myeloma Euronet.

In 2011 MijelomCRO was founded as a non-governmental organization to support MM patients in Croatia.

Mijelom CRO is a member of the Myeloma Patients Europe since its formation in 2011.

Her main concern is poor access to novel therapies in Croatia and the regions surrounding it. By working within MPE she aims to focus on what is universal within our membership whilst taking into account cultural and economic differences. In this way MPE can be an effective, relevant voice of MM patients in Europe and make a real difference to their lives.


Marta Ballester Project Coordinator, Avedis Donabedian Research Institute

MSc Politics and Government in the European Union; London School of Economics and Political Science (LSE) and MSc in Public Management; Autonomous University of Barcelona (UAB)

Marta Ballester is a project coordinator and researcher in the Avedis Donabedian Research Institute (Autonomous University of Barcelona). In the last few years she has been focused in the area of person-centred care. She recently participated as a researcher and project coordinator in the EU project EMPATHiE (Empowering Patients in the Management of Chronic Diseases), the first EU tender on patient empowerment. She has also carried out an international overview on the participation of patients’ organizations in the design, implementation and evaluation of health policies.

She is currently involved as researcher in the PiSCE platform of experts on self-care (DG Sante) and the development of the European Atlas on Access to Myeloma Treatment (Myeloma Patients Europe).

Nathalie Bere Patient Relations Coordinator, European Medicines Agency (EMA)

BSc (Psychology) and MSc (Public Health)

Nathalie has been working at the European Medicines Agency (EMA) for over 17 years and is currently responsible for the interaction and involvement of patients and consumers in EMA activities.

Since January 2009, Nathalie has been dedicated to supporting the Agency’s engagement with patients and consumers via a network of over 35 European patients and consumers organisations, including management of the Agency’s “Patients and Consumers Working Party” (PCWP). Her work involves not only the daily interactions with patients, but also developing and monitoring the scope of involvement of these stakeholders within the various Agency activities, such as participation in scientific advisory groups, committee consultations and the review of medicines information for patients.

During the past few years there has been a significant increase in patient participation and Nathalie is committed to further strengthening this involvement, with particular emphasis on ensuring adequate training and support is given to those who participate.


Sarper Diler CEO, KANKO/BIRKAN & President, Myeloma Patients Europe

Sarper is President of MPE and CEO of KANKO/BIRKAN .

He is a Professor at Istanbul University Medical Faculty and holds a Hematopoietic Stem cell Co-ordinatorship Certificate of the National Marrow Donor Programme (NMDP) of the US. He mainly works with KIR Genes, HLA polymorphism and disease associations as well as matching in stem cell transplant settings and specialized in biobanking (bone marrow, cord blood, tissue). He is one of the pioneers of biobanking in Turkey.

He was co-founder and member of the Interim Board of MPE and was elected to the MPE Board as vice-president at its first Annual General Meeting in March 2012. He is also a Board member of the International Lymphoma Coalition and a member of the World Marrow Donor Association (WMDA) and KITVAK.

Having a beloved brother pass away of cancer years ago has driven Sarper to fight against cancer. His popularity from his academic, medical professional career as well as in the media has been instrumental in driving pioneering NGO projects on cancer.

He lives in Istanbul and is married, with a son.

Maria Mavris Patient Relations in Patients and Healthcare Professionals Department, European Medicines Agency (EMA)

Ananda has been Operations Manager at MPE since March 2013.

She holds a law degree from the University of Barcelona and a Master’s degree in Health Policy, Planning and Financing from the London School of Economics and Political Science and the London School of Hygiene and Tropical Medicine. Her main field of interest is cross border healthcare within the EU and health data protection.

She started getting involved in patient advocacy in 2007. Since then she has collaborated with a number of patient organizations across Europe. She has worked at the leading Institute of Public Law (IDP Barcelona) and the European Commission (DG Health and Consumers). Currently she is also a legal advisor in the clinical ethics committee of the Hospital de Mollet (Barcelona).

Ananda has lived and worked predominantly in Spain, Germany, the UK and Belgium. Currently she is based in Brussels.


Kate Morgan Senior Policy Officer, Myeloma UK

Kate has worked for Myeloma UK for over six years and coordinates the policy and campaigns work of the organisation.

She has responsibility for the organisation’s engagement with UK policy-makers on a range of issues from market access and pricing through to patient access to information and support in the NHS. A large part of her role focuses on health technology assessment and treatment access both nationally and locally across the four nations of the UK. She is a patient involvement advisor to the Scottish Medicines Consortium and sits as a patient representative on the Chemotherapy Clinical Reference Group within NHS England which provides advice to the NHS in England on access to chemotherapy.

Myeloma UK is an organisation that helps to improve treatment and standards of care for myeloma patients through research, education, campaigning and raising awareness. For more information visit www.myeloma.org.uk

Elena Nicod Research Officer, Department of Social Policy, LSE Health

Elena Nicod is a Research Officer at LSE Health. Her main areas of interest are around pharmaceutical pricing, reimbursement and market access, and her research focuses on Health Technology Assessment (HTA).

Other research projects focus on the burden of illness of a retinal disorder, and the costing of a retinal surgical procedure in the UK. She is also participating in a number of EU-projects (Advance-HTA, Burqol, Rare-BP).

Elena is currently undertaking a PhD in Social Policy at the LSE, and holds an MSc HPPF from the London School of Hygiene and Tropical Medicine, and a BSc/MSc in Business Administration from HEC Lausanne, Switzerland. Prior to LSE, Elena worked as Coordinator of a clinical trial unit at the CHUV Lausanne, and as administrator of the Swiss Vaccine Research Institute during its launch in 2009.


Ananda Plate Operations Manager, Myeloma Patients Europe

Ananda has been Operations Manager at MPE since March 2013.

She holds a law degree from the University of Barcelona and a Master’s degree in Health Policy, Planning and Financing from the London School of Economics and Political Science and the London School of Hygiene and Tropical Medicine. Her main field of interest is cross border healthcare within the EU and health data protection.

She started getting involved in patient advocacy in 2007. Since then she has collaborated with a number of patient organizations across Europe. She has worked at the leading Institute of Public Law (IDP Barcelona) and the European Commission (DG Health and Consumers). Currently she is also a legal advisor in the clinical ethics committee of the Hospital de Mollet (Barcelona). Ananda has lived and worked predominantly in Spain, Germany, the UK and Belgium. Currently she is based in Brussels.

Kathy Redmond Owner, Redmond Consulting

Kathy Redmond was born in Dublin, Ireland and is now based in Lugano, Switzerland. On qualification as a nurse in 1983 Ms Redmond worked in a number of clinical positions before becoming a lecturer in cancer nursing at University College Dublin, Ireland. In 1993 she was awarded a Master of Science (MSc) in Advanced Clinical Practice (Cancer Nursing) from the University of Surrey, UK.

Ms Redmond has served as President of the European Oncology Nursing Society (EONS) and as a Board member of numerous European and International organisations. She was awarded the EONS Distinguished Merit Award as well as honorary membership of the Society In recognition of her contribution to the development of cancer nursing in Europe. She played a pivotal role in the establishment of the European Cancer Patient Coalition and has helped set up numerous other global and European advocacy organisations and networks including Lung Cancer Europe and the International Neuroendocrine Cancer Alliance.

In 1998 she moved to Italy and started working as a freelance consultant on cancer-related projects. In 1993 she set up Redmond Consulting – a highly-specialized, independent firm that provides strategic consultancy and meeting facilitation services to both non-profit and commercial organisations. She is Editor of the European School of Oncology’s (ESO) magazine Cancer World (www.cancerworld.org). She is a Fellow of the European Academy of Cancer Sciences. She has undertaken a course in advanced facilitation and is currently completing an executive masters in Coaching and Consulting for Change run jointly by the University of Oxford, UK and HEC in Paris, France.


Hans Scheurer Patient Relations Coordinator, European Medicines Agency (EMA)

Chairman board Hematon Myeloma and Waldenstrom’s globulinemia (2015), Chairman a.i. board Hematon patientgroup Myeloma and Waldenstrom’s globulinemia (2014), Chairman committee Hematon Communication & Information (jan-nov 2014), Member Myeloma Patients Europe (since april 2014 MPE).

Hematon is a patient organisation for patients with a hemato-oncological disease. Our patientgroup Myeloom & Waldenström (HMW) gives support to patients by organising informal and informative meetings in the regions, and on internet. We inform our patients also in our Hematon Magazine, with brochures and patientbooks and with information and latest news on our website. In the field of healthcare in the Netherlands we fight for the interests of our patientgroup, mostly in cooperation with partner patientgroups within Hematon, or with other relevant partners. We are active in Europe (MPE, EWMnetwork). Hematon has 4500 members and works with 160 volunteers.

Thank you for your participation!

We are very grateful to the following sponsors for their continous support

MPE AGM 2015 - Agenda

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