Clinical researchers from the Stanford Neuromuscular department are looking for individuals who have been diagnosed with Cystinosis Myopathy, to...
Read moreBy Cystinosis Research Network
April 14, 2022
On Wednesday, April 13, Leadiant Biosciences confirmed CYSTARAN eye drops are available for those who qualify. Along with a...
Read moreBy Cystinosis Research Network
April 13, 2022
Could newborn screening provide a turning point in the natural history of cystinosis? Review the latest publication “Newborn Screening: Review of...
Read moreBy Cystinosis Research Network
March 31, 2022
Recordati Rare Diseases announced the launch of a new educational website: www.cystinosisinfocus.com. The site aims to help families manage...
Read moreAmgen has partnered with Believe Limited and the Cystinosis Research Network to bring back the third annual, Speak Up,...
Read moreAs of October 6, 2023, Amgen officially acquired Horizon Therapeutics. For our cystinosis community using PROCYSBI as a therapeutic...
Read moreThe long awaited Cystinosis Advocate Newsletter is here. Choose from research updates, advocacy efforts, family stories, events, cystinosis support...
Read moreIn May 2023, Novartis acquired the investigational autologous hematopoietic stem cell (HSC) gene therapy program for the treatment of...
Read moreCelebrate Halloween from home this year. ALAB invites you to a free, online event that will test your spooky...
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