Organisations de patients
Royaume-Uni

Polycystic Kidney Disease Charity, London
URDDAD Foundation – The ultra rare Diseases, Disorders and Disabilities Foundation, London
Bardet-Biedl Syndrome UK, Harwich
Alport UK, Gloucestershire
Organisations de patients au Royaume-Uni
1 – Polycystic Kidney Disease Charity (PKD UK), London*
2 – URDDAD Foundation – The ultra rare Diseases, Disorders and Disabilities Foundation, London
3 – Bardet-Biedl Syndrome UK, Harwich
4 – Alport UK, Gloucestershire
*European Patient Advocacy Group (ePAG)