EMM 2012 Brussels
The EURORDIS Annual General Assembly took place on 23 May, from 9:00 to 11:00, in Brussels, Belgium.
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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.
EURORDIS Membership Meeting 2012 Presentations
1. Fundraising for rare disease patient groups
2. Advocacy actions for access to treatment & medicines:
3. Creating a disease specific European Federation– Dos and don’ts
4. How can patient organisations address new issues of ageing in people with rare diseases
5. EURORDIS activities at the EMA & Training programmes
Introduction, Lesly Greene
6. EURORDIS' activities on EU and National Policies
Patient Advocates Capacity Building Workshops
1. Online Communities
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?
4. Centres of Expertise: Quality criteria and How can patients participate in the evaluation of Centres of Expertise?
5. Registries, Bio banks, Research: patient contribution to operational models of national and international initiatives
6. Compassionate use programmes for orphan drugs