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.

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

The purpose of the meeting was 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 was 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 were invited. Members of the Cystinosis Foundation Ireland Scientific Advisory Board were also be in attendance. Full report on this soon.

research - find out more

Cystinosis Foundation Ireland supports and endorses the campaign which was launched 20th May 2014.

This group are calling on the Government to amend the Health Act of 1970 so that any child diagnosed with a serious illness or congenital condition is legally entitled to a full Medical Card.

Please visit their site and if you agree with their aim please sign the petition.

We have.
medical, media - find out more
Some FUN dates for your diaries!

2nd June:

Women's Mini Marathon:  
Some of Team Cystinosis who took part in this year's Mini Marathon

21st June:

Thank you
to the team at
Purcell Masterson for holding a coffee morning in aid of cystinosis research. Go to our fundraising page for more details:

5th July
Family Fun Day, Preston raised almost €3,000 - well done everyone!

13 September
Hell & Back, Bray

12/13 September:
Coast to Coast Cycle

For more info contact us:

fundraising and donations - find out more

latest news

Jul 03, 2014

National Plan for Rare Diseases Launched
The Minister for Health today launched the National Rare Disease Plan for Ireland 2014-2018 Find out more

Jun 24, 2014

Data published in Journal of Pediatrics regarding the efficacy of Procysbi
This data has shown that Procysbi improved quality of life and preserved kidney function in cystinosis patients. Find out more

May 01, 2014

5th July is the date you want to put in your diaries! Find out more

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