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.

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

We have.

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
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
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!

Why not take part in a FUNdraising event? Post a photo of your #CystinosisSillySelfie on your Facebook page, make the post public so we can all join the fun. Ask some friends to join in the fun too and always use the #.  You can then invite people to text SILLY to 50300 to make a €2 donation to Cystinosis Ireland. Here's an example of someone who already has!

fundraising and donations - find out more

latest news

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

Nov 20, 2014

Voting Closes Tomorrow!
Please keep voting for our entry in the Better Together Video Competition. Find out more