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


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?

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



Page created: 23/04/2010
Page last updated: 24/10/2013
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases