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OrphaNews Europe

EC rare disease consultation reaps unprecedented number of responses

The Public Consultation for a future Communication on European Action in the Field of Rare Diseases, entitled Rare Diseases: Europe's Challenges, drafted by the European Commission in close collaboration with the Rare Diseases Task Force, has culled the largest response ever for a public consultation. More than 600 contributions were received by the EC during the consultation period that ran from mid-November until 14 February. The average number of responses to a consultation is 60. This overwhelming reaction is being taken as a sign of proof of the pertinence of the Consultation on Rare Diseases and the desire across Europe to see its provisions implemented in the near future.

After incorporating the suggestions received from the Public Consultation and the impact assessment of the EU services, the Communication will be presented to the European Parliament (most likely in September), and the Council of Ministers, the Economic and Social Committee, and the Committee of Region (hopefully by the end of the year). It is expected that the Parliament and the Council of Ministers will issue Recommendations on how to implement the suggested actions presented in this Communication. The responses to the Consultation will soon be available online, but OrphaNews Europe advises you to prepare your reading glasses and find a comfortable chair - the Consultation responses will make for over one thousand pages of reading!