- Category: Support imagine
- Published: Tuesday, 08 April 2014 10:55
Rare Diseases Alliance
In order to better support children and their families and raise awareness of this cause which now affects one in 20 people in France, the Imagine Foundation sees the Rare Diseases Alliance as a valuable ally.
On the common issues of rare diseases and rare disabilities, genetic or otherwise, the mission of the Rare Diseases Alliance is to create and develop all actions of research, support, information, training and demands, in order to :
- Make the public and public authorities aware and able to recognize rare diseases by their scientific, health and social challenges, as well as the people they affect.
- Improve the quality of life and life expectancy of people through access to information, diagnosis, treatment, rights, care and integration.
- Promote scientific and clinical research, and provide the hope of finding a cure.
Hope Challenges for Orphan Diseases charity (DEMO)
The DEMO (Hope Challenges for Orphan Diseases) charity started out as a group of friends of a family whose son was suffering from an orphan disease. DEMO now organizes events to raise money for patient care and medical research in the field of orphan diseases.
The charity's biggest event of the year is the Christmas Market in Corcoué-sur-Logne (Western France), the village where DEMO was founded. Since 2009, all profits from the market have gone to fund the Imagine Foundation's research on genetic diseases.