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
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  • 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

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

 

Author: EURORDIS

Page created: 23/04/2010
Page last updated: 24/10/2013
 
 
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