In February, took place the second day of rare diseases. These affect 25 to 35 million Europeans, including 3 million French. or the first time on February 28 this year, they are associations around the world who have pooled their shares in favor of information on rare diseases at the International Day dedicated to their condition. In France, the Alliance for Rare Diseases, which organized the awareness day. What are they?
Association Act 1901, the Alliance for Rare Diseases, founded February 24, 2000, now comprises 183 patient organizations and welcomes his patients and families in isolated "orphaned" associations. It is, as stated in the preamble of its constitution, "a collective, a movement and a network ... It is a union that respects the identities and autonomy of each member to which it does not replace." It represents approximately 2,000 rare diseases and 2 million patients.
The mission of the Alliance for Rare Diseases is to create, develop, on issues common to rare diseases and disabilities rare, genetic or not, all research, support, information, training and advocacy for:
- Publicize and recognize rare diseases on their scientific, social and health, as well as those affected by them, to the public and government,
- Improving quality of life and the life expectancy of people with access to information, diagnosis, care, rights, support and integration,
- Promoting scientific and clinical research, giving hope of a cure.
To learn more about this association and its activities, you can visit their site Web
Credits
Alliance for Rare Diseases
