European action in the field of rare diseases
JAN 09
The Proposal for Council Recommendation on Rare Diseases is adopted by the Commission and on the agenda of the EU Presidency. "We want to bring patients with rare diseases out of the shadows. Patients spend too many years of uncertainty before their conditions are recognised, diagnosed and treated," said European Commissioner for Health, Androulla Vassiliou.
"Expertise on rare diseases is fragmented across the EU. Even the very existence of some of these diseases is not fully recognised. This is an area where the added value of working together at European level is clear and concrete, and can make the difference between marginalisation and proper treatment for millions of people across Europe”, said Vassiliou.
EURORDIS is extremely satisfied with this adoption and considers it in many ways a historical moment for the rare disease community at large. EURORDIS is particularly pleased with the combination of the Council Recommendation together with the Communication. In fact, the Recommendation will give stronger political weight to the Commission Communication and consequently, will further promote the cause of rare diseases as a public health priority.
T
he text of the recommendation highlights the need to establish national strategies and plans for rare diseases in order to provide patients with rare diseases universal access to high quality care, including diagnostics, treatments and orphan drugs throughout their national territory on the basis of equity and solidarity throughout the EU.
Since the Commission Communication is 'soft law', the Council Recommendation is essential to guarantee the Communication is taken up at national level by each Member State. The Council Recommendation was on the agenda of the French EU Presidency, and is now on the agenda of the following Czech and Swedish Presidencies.
Read more:
European Commission Communication on Rare Diseases
Proposal for a European Council Recommendation on rare diseases
Read UPDATE from Sept 2009
Author: Gemma Lougheed
Photo credits: © European Community
