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

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.

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

11 Feb 2015:
Entries are now open for the VHI Women's Mini Marathon which takes place on Monday 1st June. You can apply using the application form which appears in the Evening Herald every Wednesday or Saturday or on www.vhiwomens

Once you have applied for your place in the race drop us a line and join our team too! Fundraising@cystinosis.ie

Congratulations and Thank you so much to Cathriona and Vinny who recently got married and decided to make a very generous donation to Cystinosis Ireland in lieu of Wedding Favours. We all wish you health, happiness and a long and happy life together!

fundraising and donations - find out more

latest news

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

Dec 24, 2014

Wishing all our friends and supporters a wonderful Christmas and health and happiness in 2015. Find out more

Dec 01, 2014

Thanks for all your votes - we have made the shortlist!
We finished 7th in our category in the Better Together Video competition and now wait while the panel reviews the top ten videos and pick the winner. Find out more