European Commission launches first public consultation on rare diseases
At the 4th European Conference on Rare Diseases, the European Commission announced its communication on future European action on rare diseases and launched a public consultation. The aim of the communication is to shape the future strategy of Community action in the field of rare diseases for healthcare, research and therapy development. 'Opportunities like this happen only once every 10 years,' says Yann Le Cam, CEO of the European Organisation for Rare Diseases (Eurordis). 'It is a political success for both our organisation and our members. We have been asking for this since our European Conference on Rare Diseases 2005 in Luxembourg under the EU Presidency.' Rare diseases are life-threatening or chronically debilitating diseases which are of such low prevalence - less than 1 in 2000 people - that special combined efforts are needed to address them. Experts estimate that there exist between 5,000 and 8,000 distinct rare diseases, affecting between 6% and 8% of the population. The objectives of the Communication are to strengthen the cooperation between the various EU programmes, to encourage Member states in developing national health policies for rare diseases, and to ensure that common policy guidelines in this field are shared throughout Europe. This will be achieved by: - improving knowledge and identification of rare diseases; - improving diagnosis and care of patients with rare diseases; - accelerating research and developments in the field of rare diseases and orphan drugs (databases, registries, repositories and biobanks, coordination between Member States' funding agencies, and intensification of therapeutic research); - empowering patients with rare diseases at individual and collective level; - coordinating policies and initiatives at national and EU level. As for the official public consultation, it will last eight weeks and seek views from the rare disease community. 'This phase is very important, because it provides each stakeholder with an opportunity to contribute and it will have an impact on the future of the rare disease community in Europe,' says Christel Nourissier, the Secretary General of Eurordis. The Communication will be discussed by the European Parliament and the Council under the Slovenian Presidency in the first semester of 2008, and should be approved in the second half of the year under the French Presidency.