Major Recommendations shaping RD policy

The EU Committee of Experts on Rare Diseases (EUCERD, 2010-2013) and the European Commission Expert Group on Rare Diseases (CEG-RD, 2013-2016) were established to support EU policy on rare diseases, and specifically provide 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 work of the EUCERD and CEG-RD was supported by the two EU Joint Actions for rare diseases, the EUCERD Joint Action (March 2012- November 2015) and RD-ACTION (June 2015- July 2018).

Membership

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

EURORDIS' involvement

These eight patient advocates (4 full members and 4 alternates) formed the EURORDIS Policy Action Group (PAG) and were assisted by two observers from the EURORDIS staff. They all attended 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 ensured that the patient perspective was reflected in all contributions and recommendations of the EUCERD and CEG-RD. They sought advice and opinions from the EURORDIS enlarged network where necessary.

Achievements: Adoption of Recommendations

The CEG-RD and EUCERD experts adopted by consensus the following recommendations and opinion. These recommendations are key in shaping current EU and national rare disease policies as they lay the foundations for the optimisation of care for rare disease patients, improved care pathways, patient registries and codifications for rare diseases:

• Quality Criteria for Centres of Expertise for Rare Diseases in Member States (2011)
• European Reference Networks for Rare Diseases (2013) & Addendum (2015, related to grouping of rare diseases and patient involvement)
• Support the Incorporation of Rare Diseases Into Social Services and Policies (2016)
• Cross border genetic testing of rare diseases in the European Union (2015)
• Rare disease patient registration and data collection (2013)
• Ways to Improve Codification for Rare Diseases in Health Information Systems (2014)
• Improving Informed Decisions Based on the Clinical Added Value of Orphan Medicinal Products (CAVOMP) Information Flow (2012)
• Core indicators for rare disease national plans and strategies (2013)
• Opinion on Potential Areas of European Collaboration in the field of New Born Screening (2013).