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
13th November 2014:

The Minister for Health today announced funding for the Health Research Board/Medical Research Charities Group (HRB/MRCG) Joint Funding Scheme.  This is a funding scheme where the HRB jointly funds research in conjunction with research charities.  Cystinosis Ireland is delighted to announce that two projects are funded this year - a fantastic achievement for a small, rare disease charity.

Read the H.R.B./M.R.C.G. Press Release

More details of the projects on our News page.

L-R: Dr Graham Love, Health Research Board CEO; Dr Leo Varadakar, Minister for Health, Philip Watt, Medical Research Charities Group Chairman; Dr Jennifer Hollywood, Researcher; Anne Marie O'Dowd, Cystinosis Ireland
research - find out more
4th June 2015:

Minister for Health, Leo Varadkar launched the National Rare Disease Office in the Mater Hospital today. Speaking at the launch the Minister said:

“This is a significant day for the management of rare diseases in Ireland.

"A very large number of diseases are classed as rare, somewhere between 5,000 and 8,000, but they affect millions of people across Europe.

"We know that people living with a rare disease and their families, especially parents of young children, are often the leading experts in their diseases. It’s important that we recognise this and provide the necessary supports.

“I see this new office becoming a focal point for rare diseases, building up information and expertise on treatment and services, nationally and internationally.”

medical, media - find out more
We want to make a very special mention to our youngest member of Team Cystinosis.  Thank you so much to Kate Swift, aged 8, who took part in the Marathon on Bank Holiday Monday to help raise funds for Cystinosis Ireland.  Here she is pictured with her Dad, or as they were known on the day, B1 and B2!


If any of your friends still want to sponsor you for your efforts in this year's VHI Women's Mini Marathon, the easiest way to collect sponsorship is to ask your friends to text MINI to 50300 to donate €4!

fundraising and donations - find out more

latest news

Jun 01, 2015

A Busy Weekend!
Thank you so much to all of you who turned up and supported us these weekend. Find out more

May 10, 2015

BAFTA Success!
Congratulations to our patron, Stephen Rea who won a BAFTA tonight. Find out more

Apr 17, 2015

Rapid way of Fundraising!
White water rafters rapidly raise cash for Cystinosis Ireland! Find out more

Feb 11, 2015

Get Training!
Enter the VHI Womens' Mini Marathon as part of Team Cystinosis Find out more