EMM 2012 Brussels

The EURORDIS Annual General Assembly took place on 23 May, from 9:00 to 11:00, in Brussels, Belgium.

• Activity Report 2011 EURORDIS Download
• Financial Report 2011 EURORDIS Download
• Candidates for election to the EURORDIS Board of Directors Download

The General Assembly was followed by the EURORDIS Membership Meeting 2012 (EMM), including 6 parallel Forums from 11:30 to 13:00 and capacity building workshops from 14:00 to 17:30.

Programme Download

EURORDIS Membership Meeting 2012 Presentations

Forums:

1. Fundraising for rare disease patient groups

• Fighting Blindness, Avril Daly, Ireland
• AKU, Nick Sireau, United Kingdom
• Debra Croatia & Croatian Society for Rare Diseases, Vlasta Zmazek, Croatia
   

2. Advocacy actions for access to treatment & medicines:

• Access to Kuvan – the Experience in Sweden, Anders Lundberg, Swedish PKU Association
• Myeloma Patients Fight for Revlimid, Greetje Goossens, Belgium
• Reimbursement of Enzyme Replacement Therapies, Hanka Meutgeert, VKS Netherlands
   

3. Creating a disease specific European Federation– Dos and don’ts

• Osteogenesis Imperfecta Federation Europe, Ute Wallentin
• European Congenital Heart Disease Organisation, Peter Van den Broeck, Belgium
• Presentation of the RareTogether! Project & Website, Rob Camp, EURORDIS
   

4. How can patient organisations address new issues of ageing in people with rare diseases

• Survey “A long life with Haemophilia” Lene Jensen, Danish Haemophilia Society
• Myasthenia Gravis Romania, Nadia Radulescu
• Les Maisons de Lyliane: A home where rare disease patients with intellectual disabilities can grow old, Janine Cayet, France.
   

5. EURORDIS activities at the EMA & Training programmes

Introduction, Lesly Greene

• Michele Lipucci,  Patient representative in the Committee for Advanced Therapies
• Tsveta Schyns, Patient representative in the Paediatric Committee
• Pauline Evers, Patient representative in the Committee for Orphan Medicinal Products
• Presentation of EURORDIS summer school and e-learning tool, Maria Mavris, EURORDIS

6. EURORDIS' activities on EU and National Policies

• The patient representative’s role, Gabor Pogany, HUFERDIs, Hungary & Patient representative in the EUCERD
• EUCERD recommendations on Centres of Expertise, Bianca Pizzera, IPOPI, Italy & Patient representative in the EUCERD
• Rare Cancer perspective in the Committee, Jan Geissler, Patient representative in the EUCERD

Patient Advocates Capacity Building Workshops

1. Online Communities

• Rob Pleticha, Social Media Strategy
• S.Donnelly, BeeForBattens
• Myopathies.info, Alexandre Mejat, France
• Community Manager, DysNet, Tania Tirraoro, UK
• M. Serrano, guiaMetabolica
   

2. Information on medicines, Market Authorisation, Pharmacovigilance: How to work with your National Competent Authority?

•  “State of affairs" - What is happening at the EMA, how involved are patients, why should they be involved at a national level, Lise Murphy, Swedish Marfan Association, DITA Task Force, PCWP
• EPF toolkit, Susanna Palkonen,  EPF Belgium
• Patient organisation’s collaboration with Agence Nationale de Sécurité du Médicament, ANSM , Claudie  Baleydier, Association Française de l'Ataxie De Friedreich, France
   

3. Directive on cross-border care: Why and how can you advocate for the implementation of the EU directive on Cross-Border Health Care at a national level to support patient mobility?

• Overview of the Directive, Nathalie Chaze, European Commission, DG Health
• National perspective, Anne Calteux , Permanent Representation of Luxembourg to the EU
• National perspective of a patient organisation, Ingrid Jageneau, Debra Belgium
   

4. Centres of Expertise: Quality criteria and How can patients participate in the evaluation of Centres of Expertise?

• Why face-to-face meetings are so valuable for all parties, Lene Jensen, Rare Disorders Denmark
• Presentation of the EUCERD recommendations on Centres of Expertise, Kate Bushby, EUCERD / Treat NMD & Care NMD, UK
• Presentation of the Evaluation of Centres of Expertise in Denmark, England, and France, Delphi process and future use of the method and outcomes: Rob Camp, EURORDIS.
   

5. Registries, Bio banks, Research: patient contribution to operational models of national and international initiatives

• Overview of on-going projects at international level and presentation of the EUCERD & Europlan Recommendations on registries, Monica Ensini, EURORDIS
• Patient and private foundations: a partnership for registry and biobank management: the German von Hippel-Lindau patient organization initiative, G. Alsmeier, VHL Germany
• Patient organisation direct access to biobanks, Dr. Marco Crimi, Telethon Italia
• Patients involvement at international level: the IRDiRC initiative, Béatrice de Montleau, AFM Téléthon / EURORDIS
   

6. Compassionate use programmes for orphan drugs

• How do we define such programmes and why are they needed? François Houÿez, EURORDIS
• Compassionate use programmes in France: the A.T.U legislation and its impact on orphan drugs. Chantal Belorgey, Agence Nationale de Sécurité du Médicament, ANSM, France
• ERTC workshop conclusions on compassionate use (21/11/2011) and proposals to move forward. Arielle North, Ancre Consultant
• Compassionate use, Michele Lipucci , Italy

Author: EURORDIS