Want a taste of what goes on at our joint Family workshop and Scientific workshops?

Thanks to Darren Frehill who came along, observed, filmed and interviewed some of us, you can take a

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

Interested in finding out more? Here's a Whiteboard animation which explains cystinosis, and all the symptoms and effects very clearly and in simple language. Take a look: View Video Here

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

patients and family - find out more

February 2017:

nosis Ireland, partnering with Cystinosis Research Network (CRN) and Cystinosis Foundation UK (CF UK) is delighted to announce its Seedcorn Funding Programme for 2017.  Application attachments can be found under 'Research'.

Please contact us at research@cystinosis.ie

Details of the two projects we are currently funding are available

research - find out more

March 2017
Thank you everyone who supported Anne Marie O'Dowd's petition to request extended access to Procysbi™ for her son Luke. Follows a statement from Horizon Pharma regarding this:


Thank you to all the families, researchers and clinicians who attended our Family and Scientific workshop weekend 24/25 February.
It was a great success and enjoyed by all.

medical, media - find out more

Join Team Cystinosis Ireland and run, walk, jog, crawl for a great cause! Registration is open now: https://www.

Once you have registered mail us at fundraising@cystinosis.ie or message us on Facebook to let us know you are joining our team. We can then set you up to collect sponsorship either online or with a sponsorship card.

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

Apr 06, 2017

Thank you!
To the Tea + Toast Theatre Company for donating tonight's performance of "Fizzy Drinks with two Straws" to us for cystinosis research. Find out more

Mar 01, 2017

VHI Women's Mini Marathon 2017
Calling all the ladies out there! Find out more

Feb 09, 2017

First Seedcorn Funding Programme Launched.
In collaboration with the Cystinosis Research Network and the Cystinosis Foundation UK Find out more

Nov 01, 2016

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