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

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

Cystinosis Foundation Ireland supports and endorses the http://www.ourchildrenshealth.ie/ 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.
medical, media - find out more
Some FUN dates for your diaries!

13 September:  
Hell & Back, Bray
You can register now on www.hellandback.ie

12/13 September:
Coast to Coast Cycle

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.

5th July
Family Fun Day, Preston raised over €3,000 - well done everyone!

21st June:

Thank you 
to the team at 
Purcell Masterson for holding a coffee morning in aid of cystinosis research. Go to our fundraising page for more details:

2nd June

Women's Mini Marathon:  
Some of Team Cystinosis who took part in this year's Mini Marathon

For more info contact us: fundraising@cystinosis.ie

fundraising and donations - find out more

latest news

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

Jun 24, 2014

Data published in Journal of Pediatrics regarding the efficacy of Procysbi
This data has shown that Procysbi improved quality of life and preserved kidney function in cystinosis patients. Find out more