Alstrom Syndrome

• Alström Syndrome UK
• Alström Syndrome Europe
• Retina UK

Bardet-Biedl Syndrome

Bardet-Biedl Syndrome UK

• BBS USA
• BBS Netherlands
• Retina UK
• Bardet-Biedl France
• Bardet Biedl Spain (ANASBABI CILIOPATIAS)

Heterotaxy

• Heterotaxy Connection

Jeune Syndrome

• Jeune Syndrome Foundation UK

Polycystic Kidney Disease

• Polycystic Kidney Disease Charity UK
• PKD International

Primary Ciliary Dyskinesia

• Dyskinesia Belgium
• PCD Support Group UK
• 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
• CureUsher
• Usher Kids

Fiona Copeland was invited to attend the Living with PCD In person meeting in Bern, Switzerland. The project Living with PCD (formerly COVID-PCD) is a research studythat aims to answer emerging questions about primary ciliary dyskinesia (PCD). Persons with confirmed or suspected PCD from anywhere in the world can participate. Participants receive a detailed questionnaire when they start the study. Extra questionnaires on special topics are sent from time to time.