Learn more about rare diseases
Day 3 Rare Diseases, held on February 28, aims to educate the public about these diseases that affect nearly one in 20 people, 3 million French and 30 million Europeans. There are 8,000 rare diseases in the world, because so-called orphan diseases neglected by medical research.
This day is an initiative coordinated by EURORDIS European Organization for Rare Diseases, which represents more than 400 patient organizations in 42 countries. Rare Diseases Day 2010 theme “building bridges between patients and researchers”, a theme that stresses the importance of research and the role of patient organizations.
Rare diseases affect each few people from the general population. In Europe, the threshold is reached a person on 2000, is for France more than 30,000 people with the same disease. Several of these diseases, however, affect a hundred people. 80% of these diseases are genetic in origin and most of them involving children. They are often severe, chronic, and involve life-threatening. Due to the low prevalence of these diseases, medical doctors are few, the knowledge is poor, the provision of inadequate care, the inadequate research. There are very few treatments.
A symposium organized by the European EURORDIS 1 March in Brussels, in cooperation with E-RARE and in partnership with the European Commission Orphanet and EUROPLAN, will advocate the inclusion of research on rare diseases in public funding schemes .
In France, associations want a second Plan for Rare Diseases, whose final version will be available in April at the stake.
Laurence Tiennot-Herment, president of the French Association against Myopathies (AFM) indicates that the association should support 43 trials within two years. Considerable resources are required for clinical development that can only be carried by public donations through the Telethon, “she pleads. It calls for public / private partnerships, noting that research on these diseases allows therapeutic innovation for common diseases.