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

23rd November 2015:

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.

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
19th November 2015:

Thank you to our friends in TV3 for organising a great fundraising night for ourselves and to also benefit Clodagh Cogley. Donna Kavanagh went along on the night and spoke to the Evening Herald

1st November 2015:

Donna Kavanagh talks to Newstalk about her son Hagan's diagnosis: 

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!

26th October 2015:
Congratulations and Thank you so much to Sean Murray who completed this year's Dublin City Marathon in aid of Cystinosis Ireland. Delighted to have you on board Team Cystinosis Sean!

fundraising and donations - find out more

latest news

Nov 23, 2015

This is now closed. Find out more

Oct 15, 2015

The call for new research projects is now open Find out more

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