I first heard of cystinosis in 2016. It was Spring, I felt. Or it should have been—life metamorphoses are...
Read moreBy Cystinosis Research Network
November 30, 2019
Life with a chronic disease can be stressful to say the least. My most frustrating moments are when I’m...
Read moreBy Cystinosis Research Network
November 30, 2019
They say sometimes it takes a village to help raise children, for us that village included two beautiful women....
Read moreBy Cystinosis Research Network
November 30, 2019
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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