Registration is now open for the 8th International Cystinosis Conference. This will be held over the weekend of 24-26th July 2014 at the Renaissance Marriott Hotel, Manchester, England.

More details and registration here

We have made a short information film about Life with Cystinosis.  Thank you so much to Darren Frehill for his generosity in making and producing this film for us.

View film here

patients and family - find out more
The Call for applications for the MRCG/HRB Joint Funding scheme 2014 has now closed.
research - find out more

Cystinosis Ireland and the Health Research Board are jointly sponsoring a workshop on 20-22 June 2014 in Dublin 

The purpose of the meeting is to get together a small group of researchers for a short workshop (1 evening and 1 day) to discuss their research activities in cystinosis as well as to consider the outlook and opportunities for research in a European context over the next five years.

The workshop sessions will be held in the Irish Stock Exchange Buildings, Anglesea St., Dublin,

In addition to the invited researchers, a small number of clinicians who treat cystinosis patients in Ireland will be invited. Members of the Cystinosis Foundation Ireland Scientific Advisory Board will also be in attendance.  

medical, media - find out more

Registration is now open for this year's Flora Women's Mini Marathon.  Entry forms in the Evening Herald every Wednesday and Saturday or you can apply online at

Once you have registered, let us know and join Team Cystinosis Ireland!
fundraising and donations - find out more

latest news

Mar 31, 2014

Raptor Phamaceuticals and Courtagen Life Sciences announce Collaboration
Courtagen Life Sciences Announces Collaboration with Raptor Pharmaceuticals for Leigh Syndrome and Other Mitochondrial Disorders Courtagen Life Sciences to Provide Genetic Profiling of Patients Enrolling in the RP103-MITO-001 Clinical Trial Find out more

Mar 10, 2014

Research Workshop
Dates confirmed for the jointly sponsored Cystinosis Ireland/HRB research workshop. Find out more

Jan 30, 2014

Eighth International Cystinosis Conference
Agenda available and registration now open Find out more

Dec 13, 2013

Full Statement on the ethical use of funds within Cystinosis Foundation Ireland Find out more