About the Rare Disease Task Force

Rare diseases are life-threatening or chronically debilitating diseases which are of such low prevalence that special combined efforts are needed to address them. As a guide, the European Commission uses the prevalence of less than 5 per 10,000 persons in Europe to describe a diseases with a low prevelance.

In January 2004, the European Commission Public Health Directorate funded the RDTF whose aims are:

• to advise and assist the European Commission Public Health Directorate in promoting the optimal prevention, diagnosis and treatment of rare diseases in Europe, in recognition of the unique added value to be gained for rare diseases through European co-ordination;
• to provide a forum for discussion and exchange of views and experience on all issues related to rare diseases.

The RDTF is led by Dr Ségolène Aymé, a medical geneticist and Director of the Orphanet database of rare diseases. The Deputy Leader is Professor Helen Dolk, Director of the Eurocat programme on congenital disorders.

It currently has 36 members comprising current and former project leaders of European research projects related to rare diseases, member state experts and representatives from relevant international organisations.