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
The Call for applications for the MRCG/HRB Joint Funding scheme 2014 has now closed.

Cystinosis Ireland and the Health Research Board jointly sponsored a workshop on 20-22 June 2014 in Dublin 

The purpose of the meeting was to get together a small group of researchers for a short workshop (1 evening and 1 day) to discuss their research activities in cystinosis as well as to consider the outlook and opportunities for research in a European context over the next five years.

The workshop sessions were held in the Irish Stock Exchange Buildings, Anglesea St., Dublin,

In addition to the invited researchers, a small number of clinicians who treat cystinosis patients in Ireland were invited. Members of the Cystinosis Foundation Ireland Scientific Advisory Board were also be in attendance. Full report on this soon.

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.

This is our video and PUBLIC VOTING IS NOW OPEN!


We could be in for a €1,000 prize so please start sharing the video and spread the word and vote NOW!  Please also spread the word!  And don't forget you can vote EVERY day on each device you own!

medical, media - find out more

GOOD LUCK TO TEAM CYSTINOSIS TAKING PART IN THE www.runamuckchallenge.com Saturday 18th October. Dirty photos promised!

Photos of our brave Hell Raisers who did the 12K Titan Hell & Back, 13th September here  
fundraising and donations - find out more

latest news

Sep 25, 2014

Please vote EVERY DAY for our video which has been entered in the Better Together competition. Find out more

Sep 22, 2014

We are Better Together!
Watch our Video entry into the Better Together competition: Find out more

Aug 25, 2014

Teams growing!
Our Cystinosis Teams for both HELL & BACK and RUNAMUCK are growing - why not join us! Find out more

Aug 08, 2014

18th October, Come and join us! Find out more