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
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Chairman:
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Mick Swift
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Secretary:
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Gerry Hoey
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Asst. Secretary:
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Sue Maguire
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Treasurer:
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Liam McFadden
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Members:
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Des Hennelly, Andy Maguire, Anne Marie O’Dowd, Eileen O’Neill, Tom McDonald
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Working Groups
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Education & Support:
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Des Hennelly, Mick Swift
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Media & Publicity:
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Sue Maguire, Mick Swift
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Fundraising:
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Des Hennelly, Andy Maguire, Sue Maguire, Eileen O’Neill
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Research Projects:
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Anne Marie O’Dowd, Sue Maguire, Tom McDonald, Mick Swift, Achim Treumann
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