20th March 2016:

Don't forget - if you are attending the 9th International Cystinosis Conference in Valencia this summer you must register. Follow this link to do so

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
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

19th November 2015:

Thank you to our friends in TV3 for organising a great fundraising night. 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: 

medical, media - find out more

Official registration closes on 11th May but you can join our team any time!

More information

fundraising and donations - find out more

latest news

Feb 26, 2016

VHI Women's Mini Marathon 2016
Register now at www.vhiwomensminimarathon.ie to secure your place in the biggest road race of the year Find out more

Jan 29, 2016

Family Workshop
All families are invited to attend an informal but informative get together 31st March - 2nd April. Find out more

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