Policy Development for Rare Diseases and Integration



This WP build on the work previously developed within the EUCERD Joint Action (EJA) intended to support the implementation of the EC Recommendations relating to rare diseases at the MS level Despite significant progress under the EJA towards implementing the Council Recommendation on an Action in the field of rare diseases (RD) and the Commission Communication (‘Rare Diseases: Europe’s Challenges), many policy areas would benefit from additional pan-European collaboration. This Policy work-stream will work with stakeholders to prioritize topics and carry out corresponding supportive actions, where there is a need to foster the implementation of policies. The topics within the scope of this work are very broad, ranging from European Reference Networks to eHealth, from RD registration to the social integration of people living with RD: for each of these subject areas, synergies will be assured with other funded initiatives. Many past and on-going initiatives have generated very valuable tools and outputs, which can offer guidance and expertise in key policy areas – such resources will be collated on the pages below, to support Member States and stakeholder groups in optimising the diagnosis, treatment  and care of people with Rare Diseases

GOALS of the Policy WP
  1. Develop and implement a methodology to support the development of policies and recommendations in association with all relevant stakeholders.
  2. Provide information and policy support to the Commission Expert Group on Rare Diseases
  3. Produce the Report/Resource on the State of the Art of Rare Diseases Activities in Europe

The new resource on the State of the Art of Rare Disease Activities in Europe will be available here (forthcoming)

Below you can find links to dedicated pages for focal topics:

♦ European Reference Networks (ERNs)

♦ eHealth and ERNs