Links
National Ciliopathy Support Groups
Alstrom Syndrome
Bardet-Biedl Syndrome
Jeune Syndrome
Joubert Syndrome
Polycystic Kidney Disease
Primary Ciliary Dyskinesia
- Dyskinesia Belgium
- PCD Support Group UK
- The Brompton Fountain
- Kartagener Syndrom und Primäre Ciliäre Dyskinesie
- DCP-Pisa
- PCD Australia Foundation
- Primary Ciliary Dyskinesia Foundation
Retinitis Pigmentosa
Usher Syndrome
Rare Disease Alliances
- Eurordis - the European organisation for Rare Diseases
- NORD - National Organization for Rare Disorders USA
- Genetic Alliance UK
- Genetic Alliance USA
- Rare Disease UK
Research Networks
European Reference Networks (ERNs)
- ERKNet - Rare Kidney Diseases, including ciliopathies
- ERN Rare-Liver