Patient Support Groups

The Ciliopathy Alliance doesn't provide direct support to patients and families. Please visit the Patient Support Groups listed here.

But, if there is no support group for your condition, please contact us and we will try to link you with other patients and families, or doctors with a special interest in your condition.

USA (2)

Europe (2)

UK (8)

Dyskinesia Belgium

Supporting PCD families in Belgium


The voice of rare disease patients in Europe.

National Organization for Rare Disorders

Alone we are rare. Together we are strong.

Polycystic Kidney Disease Charity

Working together to find a cure and treatments for all forms of PKD

RP Fighting Blindness

Helping people live with retinitis pigmentosa and funding research


For deafblind people

Usher Syndrome Coalition

Working to find a cure for Usher syndrome, the most common cause of combined deafness and blindness