Who are we?

Latest News

Cure Cystinosis International Registry Launched

An International partnership is behind this launch Find out more...

Dublin Airport Taxi Drivers get moving for Cystinosis

A Fundraising evening held 25th August and hosted by Dublin Airport taxi drivers was a great success Find out more...

Hannon wins Medal!

James Hannon won a silver medal in the European Transplant & Dialysis Games Find out more...

Great Day and Evening in Preston

The Fifth Fundraiser held in Hertfordshire in aid of Cystinosis research was another great success. Find out more...

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 in affected by Cystinosis.

Cystinosis Foundation Ireland was founded in 2003 by these people 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.



Personnel

Our Patron is the Oscar nominated actor Stephen Rea

Cystinosis Foundation Ireland Limited was formed in accordance with the terms of the Charities Act 2009

 

Executive Committee
 

Chairman:

Mick Swift

 

Secretary:

Gerry Hoey

 

Asst. Secretary:

Sue Maguire

 

Treasurer:

Liam McFadden

 

Members:

Des Hennelly, Andy Maguire, Anne Marie O’Dowd, Eileen O’Neill, Tom McDonald


Working Groups

 

 

 

Education & Support:

Des Hennelly, Mick Swift

Media & Publicity:

Sue Maguire, Mick Swift

Fundraising:

Des Hennelly, Andy Maguire, Sue Maguire, Eileen O’Neill

Research Projects:

Anne Marie O’Dowd, Sue Maguire, Tom McDonald, Mick Swift, Achim Treumann