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
Cystinosis Foundation Ireland supports and endorses the http://www.our
campaign which was launched 20th May 2014.
This group are calling on the Government to amend the Health Act of 1970 so that any child diagnosed with a serious illness or congenital condition is legally entitled to a full Medical Card.
Please visit their site and if you agree with their aim please sign the petition.
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:
The Call for applications for the MRCG/HRB Joint Funding scheme 2014 has now closed.
Cystinosis Ireland and the Health Research Board jointly sponsored a workshop on 20-22 June 2014 in Dublin
The purpose of the meeting was to get together a small group of researchers for a short workshop (1 evening and 1 day) to discuss their research activities in cystinosis as well as to consider the outlook and opportunities for research in a European context over the next five years.
The workshop sessions was held in the Irish Stock Exchange Buildings, Anglesea St., Dublin,
In addition to the invited researchers, a small number of clinicians who treat cystinosis patients in Ireland were invited. Members of the Cystinosis Foundation Ireland Scientific Advisory Board were also be in attendance. Full report on this soon.