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
Cystinosis Ireland will be holding a Scientific Symposium/Workshop Autumn 2015 for researchers to meet and share vital information. More details soon.

Details of the two projects we are currently funding are available here.

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
17th August 2015:

Raptor receives FDA approval for use of Procysbi in 2-6 year olds. You can read more here

4th August 2015:

Anne Marie O'Dowd spoke to the Irish Times about her son Luke's life with Cystinosis

23rd July 2015:

Watch Donna Kavanagh and Dr. Atif Awan talk to Mark Cagney and Sinead Desmond about her son Hagan's diagnosis with Cystinosis earlier this year. They appeared on TV3's "Ireland AM" show today.

15th July 2015:

Donna also gave a very moving interview to Spin 1038 please listen 

medical, media - find out more
Don't forget - an easy way to donate is to text MINI to 50300 to donate €4!

Coming up 10th October 2015...have you got the nerve to take on The Cube ? Take a look and if you do please come and join us for a fun night of fundraising at The Osprey Hotel, Naas. If you are interested in becoming a team member please mail us at fundraising@cystinosis.ie

Well done to the lads in Ashbourne Golf Club currently working hard on their inaugural Cystinosis Ireland Golf Classic on 27th August. 
fundraising and donations - find out more

latest news

Aug 24, 2015

Meet the Team!
Introducing the team currently undertaking research in the University of Auckland Find out more

Aug 17, 2015

Raptor Pharmaceuticals - Procysbi news
FDA Approval has been given for use of Procysbi in children aged 2-6 years. Find out more

Jul 23, 2015

Cystinosis features on TV3
Donna Kavanagh, Mum to Hagan the most recently diagnosed baby with cystinosis in Ireland appeared on TV3's breakfast show today. Find out more

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