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Christel Nourissier
Christel Nourissier is the President of Prader-Willi France, a patient association bringing together more than 500 families. Established in 1997, Prader-Willi France informs parents and professionals about Prader Willi syndrome, the association encourages diagnosis, appropriate care and research, established a network to support people living with this rare genetic disease and their families.Christel Nourissier cares for her daughter, Amélie, 28 years old, born with Prader-Willi syndrome. She is also secretary general of Eurordis, the European organisation for rare diseases, dedicated to improving the quality of life of people living with rare diseases in Europe. Eurordis represents 260 rare disease organisations in 29 different countries.
It is, therefore, the voice of 30 million patients affected by rare diseases throughout Europe.
