European Commission calls for European focus on rare diseases
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, EU wide, strategy to support Member States on issues including diagnosis, treatment and care for rare disease patients throughout Europe.
"We want to bring patients with rare disease out of the shadows. Patients spend too many years of uncertainty before their conditions are recognised, diagnosed and treated," said European Commissioner for Health, Andoulla 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.
"The Communication aims at bringing the 30 million EU citizens living with rare diseases to the forefront of public health policy. Preparatory work began at the European Conference for Rare Diseases organised by EURORDIS in 2005. Public consultation by the Commission was launched at the European Conference on Rare Diseases in November 2007 and patients were involved throughout the whole process and are now expecting tangible benefits to their lives," Christel Nourissier, Secretary General of EURORDIS.
"At this moment in time, advocacy is more important than ever and EURORDIS will continue in building a Europe based on good health for all and especially those suffering from rare diseases," she added.
EURORDIS regards the Commission’s adoption as a way forward in improving the prevention and diagnosis of rare diseases, and to ensure equal access to treatment for all patients throughout Europe: working at the European level can make a difference for millions of people and bring real added value.
"Today we see the European Union is building a more integrated and comprehensive public health policy which is a real milestone for better care and standard of living for those with rare diseases in Europe," said Yann Le Cam, CEO of EURORDIS.
The Commission Communication sets out strategy for three main areas:
supporting national plans for rare diseases in each Member State
strengthening cooperation and coordination for rare diseases at European level
highlighting the need to improve recognition and visibility of rare diseases
It is hoped that European cooperation will bring together scarce resources for rare diseases. European action will help patients and professionals to collaborate across Member States in order to share and coordinate expertise and information, especially through Centres of Expertise.
The next step is an EU conference ‘National Strategies and Action for rare Disease in Europe’ in Paris on 18 November.
The Commission underlined the fragmentation of knowledge about rare diseases across the European Union which make rare diseases a prime example of where working at European level is absolutely necessary and beneficial.
Both documents have been sent to the European Parliament for opinion and to the European Council for adoption of the recommendation. They have also been sent to the Committee of the Regions and to the Social and Economic Committee. The adoption of the Recommendation is on the agenda of the Health Ministers Council under both the French (16 December 2008) and Czech (9 June 2009) EU Presidencies; if necessary, it will also feature on the Swedish EU Presidency’s agenda.
"In the positive light of the Commission Communication, we look forward to an enhanced Rare Disease Day in 2009, with real reason to battle forward and raise awareness of the needs and expectations that rare disease patients have", said Yann Le Cam.
The two documents can be found here
