The Alliance’s primary mission is to contribute to the worldwide standardization of information on the clinical and molecular diagnosis, and the treatment management guidelines, of SRS. By connecting patients, families and medical professionals throughout the world to patient-support organizations in their local geographic areas, up-to-date diagnostic and therapeutic strategies will become more readily available.
ABOUT US
Our Mission
Our Team
Who’s behind the scenes?
Jenny Child
United Kingdom
Child Growth Foundation
Jennifer Salem
USA
Magic Foundation
Professor Irene Netchine
France
Hopital Trousseau, Paris
Nonjia Rosen
Belgium
ALICE
Benedicte Perrotin-Lemaire
France
AFIF SSR/PAG
Professor Klaus Mohnike
Germany
University of Magdeburg
Dayna Carney
USA
Magic Foundation