National Ciliopathy Support Groups

Alstrom Syndrome

• Alström Syndrome UK
• Alström Syndrome Europe
• Retina UK

Bardet-Biedl Syndrome

• Bardet-Biedl Syndrome UK
• Retina UK
• Bardet-Biedl France
• Bardet Biedl Spain (ANASBABI CILIOPATIAS)

Jeune Syndrome

• Jeune Syndrome Foundation UK

Joubert Syndrome

• Joubert Syndrome UK

Polycystic Kidney Disease

• Polycystic Kidney Disease Charity UK
• PKD International

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

• Retina UK

Usher Syndrome

• Usher Syndrome Coalition USA
• Retina UK
• Sense UK

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

• UK Cilia Network
• The Cilia Group Denmark

European Reference Networks (ERNs)

• ERKNet - Rare Kidney Diseases, including ciliopathies
• ERN Rare-Liver