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 was 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.

We have entered a video this year and public voting will open on 25th September. Details on how to vote for us available shortly.  We could be in for a €1,000 prize so please start sharing the video and spread the word and vote!


medical, media - find out more
Some FUN dates for your diaries!

18th October:
Registration is now open at www.runamuckchallenge
. If you are entering as part of our group please enter as an individual but use "Cystinosis" as your surname, i.e. John Cystinosis.  That way you will be part of our group.

For more info contact us: fundraising@cystinosis.ie

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 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

Jul 03, 2014

National Plan for Rare Diseases Launched
The Minister for Health today launched the National Rare Disease Plan for Ireland 2014-2018 Find out more