10 February 2017
Cystinosis Ireland are working very hard with all parties in an effort to make Procysbi available to all those living with cystinosis in Ireland.
Anne Marie O'Dowd is looking for extended access to Procysbi for her son Luke, who took part in a clinicial trial for the drug. If you would like to support this please sign and share the petition below:
Save the date! The Dublin Cystinosis Family workshop and the 3rd Dublin Cystinosis Scientific Workshop will be taking place February 24th and 25th 2017 at the Royal Marine Hotel in Dun Laoghaire! We look forward to seeing you all there.
Better Together Competition:
Thanks everyone for all your votes. We made the top 5 in our category!
19 October 2016:
Cystinosis Ireland has received 15 copies of the ‘Super Cysteamine Team’ comic book by Kevin McCalla and the Cystinosis Research Network. Please contact us if you wish to receive a copy!