October 2016:

We have always taken an active interest in seeking out and funding the best possible research into all aspects of life with Cystinosis. This film is talks about public and patient involvement in research; it is particularly significant for us as this involvement is a major aspect in the HRB Joint Funding Scheme which we have been part of for several years.

View Film Here


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



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: View Video Here



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

Cystinosis Ireland has entered The Wheel’s ‘Better Together’ Video Competition! Winners of this competition will be rewarded with €1,000 euros as well as some Adobe tech prize packs!

WE NEED YOUR HELP! Please vote for us and share the link with your own social groups. You can vote multiple times in one day on different devices and browsers. So vote on your phone, your work computer, your home laptop, tablets, etc and on multiple browsers! Voting ends Dec 7th – Please vote every day!  http://www.bettertogether.ie/video/cystinosis-ireland-bettertogether


19 October 2016:

Cystinosis Ireland has received 15 copies of the ‘Super Cysteamine Team’ comic book by Kevin McCalla and the Cystinosis Research Network. Please contact us if you wish to receive a copy!

medical, media - find out more

You can donate €4 any time 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

Nov 01, 2016

WE NEED YOUR HELP!!
Cystinosis Ireland has entered The Wheel’s ‘Better Together’ Video Competition! Find out more

Oct 19, 2016

First Cystinosis comic colouring book launched!
"Super Cysteamine Team" comic book received in Ireland! Find out more

Jun 27, 2016

CYSTINOSIS IRELAND EVENTS CALENDAR LAUNCHED
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