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


The Better Together Video Competition provides an opportunity for Irish non-profit organisations like us to show the people of Ireland the part they are playing in making us all better together.

Voting is now closed, but please take a look at the video anyway! Thanks to Dylan and Rachael for putting this brilliant short film together.

medical, media - find out more
Thank you everyone who helped us with our bag packing at Dunnes, Ilac Centre over the weekend of 28/29 November. We collected €1,590 - a fantastic amount so thank you all the shoppers in Dunnes who contributed too!

Make a cuppa and have a look at our wonderful Runamuckers.  We had the biggest turnout yet, almost 40 participants. As well as raising awareness with our bright yellow enthusiastic group, we also raised €4,830! Thanks to everyone who took part and special thanks to all their sponsors.

fundraising and donations - find out more

latest news

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

Nov 13, 2014

Minister for Health makes announcement on HRB Joint Funding Scheme
Cystinosis Ireland one of the recipients this year Find out more

Nov 03, 2014

Voting still open! Find out more