Leaving No One Behind: European Commitment to Rare Diseases

Practical information

• Composition of the study group & calendar
• Administrator in charge: Valeria Atzori / Assistant: Joëlle Doudard

Summary

EU action on rare diseases has great added value due to the fact the cooperation between Member States can help in interconnecting expertise and accumulating knowledge on rare and complex syndromes. The topic of orphan diseases is traditionally on the agenda of the presidencies. Therefore, it would be useful if an EESC study could take stock of the achievements and challenges at EU level and identify possible ways to move forward. As the situation is evolving, namely with the new Joint Action JARDIN (and even with the Spanish Presidency last year and a partnership event at the EESC in March) a joint SOC/TEN opinion on this issue could be an opportunity to express the EESC's developing position