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Cystinosis Ireland #BetterTogether
Cystinosis Ireland

Cystinosis Ireland was founded in 2003 as an Irish registered charity. It is an all volunteer, non-profit organisation dedicated to raising money to fund research for cystinosis in Ireland and globally, working alongside other international cystinosis charities in hopes of finding a cure. We also reach out to families of newly diagnosed children, as well as offer ongoing support, assistance, and advocacy for those patients living with cysinosis in Ireland.

Category Type: 
Epic Video (Small Organisations) - Small / voluntary groups (no paid staff)
Charity Reg. and/or CHY No.: 
CRA 20053796
Company number: 
Type of Cause: 
Medical / Health
How The Public Can Help: 

Cystinosis Ireland is always working to raise awareness of this disease. The greatest support the public can offer us it to join us at community events! Your participation will help us make our community even stronger.

Transparency statement: 

Cystinosis Ireland exists solely to support people with the condition and their families. We do this by funding medical research with the aim of better understanding the condition, improving existing treatments and hopefully one day the discovery of a cure.

Cystinosis Ireland does not employ or remunerate any staff and is wholly run by volunteers. Cystinosis Ireland has no overheads such as staff costs, fundraising commissions, rental of premises, office furniture or equipment. This ensures that all funds raised go into clinical research of cystinosis. All research undertaken is done by working with Ireland's Health Research Board and projects are only selected once approved by a panel of experts and the Board of Cystinosis Ireland.

A detailed listing of all funds raised and used is presented in our Audited Financial Statements, available in the "Who are we" section of our website. For further details, please contact us directly at

Public Contact Details: 

Mail: 1-2 Cavendish Row, Dublin 1, Ireland



Twitter: #cystinosisirl