The European Commission Expert Group on Rare Diseases


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.


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.

These patient advocates form the EURORDIS Policy Action Group (PAG) and are assisted by two observers, who are members of the EURORDIS staff.

Achievements and ongoing activities

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.

Adoption of Recommendations and Opinion:

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: 29/03/2017
A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases Internacional, é uma iniciativa da EURORDISRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. A RareConnect é uma iniciativa da EURORDIS 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 Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases