French registry information lists the association as active in 2026.
Organization profile
Organization type
Patient organization / disease alliance
Headquarters / base
France
Geographic scope
International
Status verification
Status last verified 2026-10-17.
Medical focus
Rare diseasesGenetic disorders
Activities
Patient supportAdvocacyResearch funding
Population served
PatientsFamiliesRare-disease communities
Analytics preferences
We use analytics to understand which medical topics, tools and site features are useful. You can allow analytics or keep only essential site functions.