Cystinosis Foundation Ireland

Cystinosis Foundation Ireland is an Irish registered charity, registered number CHY15517. It is an all volunteer, non-profit organisation dedicated to providing services for those suffering from Cystinosis.

There are currently six children and three adults diagnosed and living in Ireland.  Cystinosis Foundation Ireland was founded in 2003 by these patients and their families and friends with the following four aims:

Research Support: The Foundation raises funds to promote research into the causes and improved treatments of Cystinosis and to hopefully one day find a cure. 

Patient/Parental support

Providing an Internet website with information on the disease and any updated information or news as it becomes available.

Education & awareness about the condition to the Medical Profession and the public. Almost nothing is known about the condition in the general public and indeed the Medical Profession. Many patients have experienced misdiagnosis, sometimes taking months and on occasion, years to be correctly diagnosed. Early diagnosis is crucial so that cysteamine therapy (Cystagon™) is started as soon as possible.