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

Raptor Pharmaceuticals have produced a Whiteboard animation which explains cystinosis, and all the symptoms and effects very clearly and in simple language. Take a look:


patients and family - find out more
13th November 2014:

The Minister for Health today announced funding for the Health Research Board/Medical Research Charities Group (HRB/MRCG) Joint Funding Scheme.  This is a funding scheme where the HRB jointly funds research in conjunction with research charities.  Cystinosis Ireland is delighted to announce that two projects are funded this year - a fantastic achievement for a small, rare disease charity.

Read the H.R.B./M.R.C.G. Press Release

More details of the projects on our News page.

L-R: Dr Graham Love, Health Research Board CEO; Dr Leo Varadakar, Minister for Health, Philip Watt, Medical Research Charities Group Chairman; Dr Jennifer Hollywood, Researcher; Anne Marie O'Dowd, Cystinosis Ireland
research - find out more
10th February 2015:

Dr. Sergio Catz and Dr. Napolitano Gennaro, two researchers at The Scripps Research Institute, whose work has been funded by the Cystinosis Research Foundation in California, have just published some exciting new findings. They 

have identified a new cellular pathway that is affected in cystinosis and it is felt that these findings could 

eventually lead to new drug treatments for reducing or preventing the onset of renal failure in patients.


22nd December 2014:

Very interesting article which aired on Sky News today and featured cystinosis.  It is about an initiative known as the 100,000 Genomes Project, which will help scientists and doctors understand more about specific conditions, including cystinosis.

medical, media - find out more

This year's Golf Classic will take place on Friday 29th May at Grange Golf Club, Rathfarnham. Contact us at fundraising@cystinosis.ie for more details.

GOOD LUCK WITH THE TRAINING TO Ann Brehony who is Swimming for a Mile in aid of Cystinosis Ireland and to John Lush who is cycling from Dunkerque to Roubaix for us too!

Enter this year's VHI Women's Mini Marathon and be part of our team. Once you have registered with www.vhiwomensmini
contact us at fundraising@cystinosis.ie to be part of our team.

Your friends can sponsor you a number of ways, the easiest is ask them to text MINI to 50300 to donate €4!

fundraising and donations - find out more

latest news

May 10, 2015

BAFTA Success!
Congratulations to our patron, Stephen Rea who won a BAFTA tonight. Find out more

Apr 17, 2015

Rapid way of Fundraising!
White water rafters rapidly raise cash for Cystinosis Ireland! Find out more

Feb 11, 2015

Get Training!
Enter the VHI Womens' Mini Marathon as part of Team Cystinosis Find out more

Jan 01, 2015

Wishing all of our wonderful friends and supporters a happy and healthy 2015 filled with lots of exciting adventures! Find out more