The European Commission Expert Group on Rare Diseases

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The European Commission Expert Group on Rare Diseases (CEG-RD) was established in 2013 for a three year mandate and replaces the EUCERD (European Committee of Experts on Rare Diseases).

Mission and tasks

The CEG-RD’s mission is to support EU policy on rare diseases. Visit the EU Commission’s website to learn more about the Expert Group’s specific tasks.

Membership

The CEG-RD brings together representatives from: the 28 EU Member States, Iceland, Norway, Switzerland, the EU Commission, the Committee for Orphan Medicinal Products of the EMA, industry and academia, as well as eight individual experts and eight patient advocates, the latter of which are from organisations that are members of EURORDIS.

EURORDIS' involvement

These eight patient advocates (4 full members and 4 alternates) nominated on the Expert Group form the EURORDIS Policy Action Group (PAG) and are assisted by two observers from the EURORDIS staff. They all attend each plenary meeting, EURORDIS covering the costs of alternates thereby ensuring a strong representation and voice of rare disease patients.

This group of patient advocates ensures that the patient perspective is reflected in all contributions and recommendations of the Expert Group. They can seek advice and opinions from the EURORDIS enlarged network where necessary.

Achievements: Adoption of Recommendations and Opinion

The CEG-RD, and in the past the EUCERD, provides policy guidance on the effective implementation of the 2008 EU Commission Communication on Rare Diseases: Europe's challenges   and the 2009 Council (of the European Union) Recommendation on action in the field of rare diseases. The EU Commission published the implementation report of these two key policy documents in 2014.

The CEG-RD and EUCERD experts adopted by consensus the following recommendations and opinions. These recommendations will possibly be revised in the future and others will be adopted on identified relevant issues in the field of rare diseases.

 

Page created: 06/08/2010
Page last updated: 23/05/2017
 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect 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