PLEASE take the time to register with the C.C.I.R. if you have not already done so. We are delighted that as at end of December 2011 there are 301 patients from 31 countries registered! The registry is sited in many research proposals and studies. HOWEVER, there are still many people who are not registered - do it today!

The Ask an Expert section is one of the most successful features. In fact recently all of the questions and answers that have been asked have been compiled and posted on the CCIR site under the FAQ tab. Please take a minute to go on the site and read the questions and answers.

Cystinosis Foundation Ireland are proud and delighted to announce that we have now funded €1 MILLION worth of research since our inception in 2003!

12th May 2012:

A clinical trial in the United States is actively recruiting for study participants with cystinosis. The title of the study is 'Research Study of Bone Marrow Transplant for Patients with Cystinosis from Matched Related Donor'. More information about the study and for researcher contact information here

Would you like to volunteer your time, energy or ideas to us? We would love to hear from you!

Our Ninth annual Golf Classic takes place Friday 1st June at Grange Golf Club Rathfarnham. This is our biggest fundraiser of the year, if you would like more details, see "Fundraising" page.

fundraising and donations - find out more

May 03, 2012

Raptor Pharmaceuticals
announces the publication of Phase 3 trial results in the Clinical Journal of the American Society of Nephrology Find out more

Apr 18, 2012

CRN announces Conference
Cystinosis Research Network, based in the U.S. announced their bi-annual conference which will take place in Washington, D.C. July 2013. Find out more

Apr 02, 2012

Press Release:
Raptor Pharmaceuticals make application for new drug RP103 Find out more

Mar 30, 2012

Raptor Pharamaceuticals submits application
For new drup, RP103 Find out more