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
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 look
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: View Video Here