24th May 2016:

Hagan meets Wes Hoolahan to wish him well for the Euros!

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 Research Call 2016 is now closed.

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

However, Cystinosis Ireland is interested in hearing from researchers with new projects and ideas at any time. Please contact us at research@cystinosis.ie

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
May 2016:

At the end of 2014 Kidney Disease: Improving Global Outcomes (KDIGO) convened a Controversies Conference on cystinosis. 49 experts from around the world met and the June issue of "Kidney International" has published their conclusions.


4th April 2016:

We had a most successful weekend in Ashbourne 1-2 April where we held our first Family workshop alongside the second Scientific workshop.

Thank you so much to Darren Frehill who came along, observed, filmed and interviewed some of us. Take a look

medical, media - find out more
THIRTEENTH Annual Golf Classic on Friday 3rd June at Grange Golf Club, Rathfarnham. Contact us at fundraising@cystinosis.ie for more details.

Zumba for Cystinosis!

fundraising and donations - find out more

latest news

May 19, 2016

Kidney International - June issue
KDIGO Conference - outcomes published Find out more

Feb 26, 2016

VHI Women's Mini Marathon 2016
Register now at www.vhiwomensminimarathon.ie to secure your place in the biggest road race of the year Find out more

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