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
27 June 2016:

Cystinosis Ireland Events Calendar launched. Take a look

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
Thank you to Damian, Brendan and all your helpers for making the Kilcock Golf Classic a huge success on 13th August 2016. Total money raised on the night was €15,535! A full list of raffle prize winners here

Details of the winners of this and of the Classic held on Friday 26th August at Ashbourne Golf Club here shortly. 

And remember you can donate €4 by texting the word MINI to 50300

100% of your donation goes to Cystinosis Ireland across most network operators. Some operators apply VAT which means that a minimum of €3.25 goes to Cystinosis Ireland. Service Providers LIKECHARITY. Helpline 0766805278.

fundraising and donations - find out more

latest news

Jun 27, 2016

Details of all forthcoming events of interest to all of our friends and donors are now available: Find out more

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