EC Communication and Council Recommendation on Rare Diseases
EURORDIS welcomes the final adoption by the European Council on June 9th, 2009, of the proposed Council Recommendation on European Action in the field of Rare Diseases. The Council Recommendation represents an important milestone for rare disease patients all over Europe. Press Release >On 11 November 2008, the European Commission adopted a Communication on Rare Diseases as well as a proposal for a European Council Recommendation. These two documents will establish an overall and comprehensive, EU wide and integrated strategy to support Member States on issues including diagnosis, treatment and care for rare disease patients throughout Europe. Read More >
The long road to this achievement began in 2007, when the European Commission DG SANCO launched an unprecedented public consultation regarding European action in the field of rare diseases on Nov. 27th, 2007 at the 4th European Conference on Rare Diseases 2007 (ECRD), held in Lisbon, Portugal.
Hundreds of stakeholders participated in the Public Consultation process for the first Commission Communication on Rare Diseases. Eurordis’ patient group members mobilised in large numbers to draft and send responses to the Communication.
All contributions received were published on the Commission’s website.
Read Eurordis’ contribution to the draft Communication >
Read Eurordis’ contribution to the draft Communication >
The Council Recommendation was then adopted by the European Council on June 9th, 2009.
This adoption marks the culmination of a series of legislative declaratory acts which have paved the way towards the recognition of rare diseases as a public health priority and as an area of unique European addedvalue for Community action.
Read more:
European Commission Communication on Rare Diseases
Proposal for a European Council Recommendation on rare diseases
European Commission Communication on Rare Diseases
Proposal for a European Council Recommendation on rare diseases
Related Eurordis newsletter articles:
- European Commission calls for European focus on rare diseases: (Jan. 09)
- Why this is important for rare disease patients and groups: (Nov. 07)
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