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

23rd November 2015:

The call for applications for the MRCG/HRB Research Call 2016 is now closed.

Thank you for the interest and we are very excited to have received several projects for consideration.

October 2015:

Introducing....Dr. Jennifer Hollywood, one of our current researchers

Details of the two projects we are currently funding are available here.

research - find out more
29th January 2016:

We will be holding our first Family Workshop from 31st March - 2nd April.  See "News" for more information.

19th November 2015:

Thank you to our friends in TV3 for organising a great fundraising night. Donna Kavanagh went along on the night and spoke to the Evening Herald

1st November 2015:

Donna Kavanagh talks to Newstalk about her son Hagan's diagnosis: 

medical, media - find out more
It's time to get training for this year's Women's Mini Marathon which takes place in Dublin on Monday 6th June.  Come and join Team Cystinosis this year!

Thank you to our friends in Leixlip Tennis Club who held a fundraising Tournament on 28th December.  They had a great turnout on a nice mild day and raised €630 for Cystinosis Ireland.  Thank you all!

fundraising and donations - find out more

latest news

Jan 29, 2016

Family Workshop
All families are invited to attend an informal but informative get together 31st March - 2nd April. Find out more

Nov 23, 2015

This is now closed. Find out more

Oct 15, 2015

The call for new research projects is now open Find out more

Aug 24, 2015

Meet the Team!
Introducing the team currently undertaking research in the University of Auckland Find out more