In recognition of Rare Disease Day 2023, the Adult Leadership Advisory Board compiled thoughts from a few cystinosis warriors....
Read moreBy Cystinosis Research Network
February 27, 2023
By Julie Ayres, mom to Sierra Sierra is approaching a rather yucky milestone—one year on peritoneal kidney dialysis. We...
Read moreBy Cystinosis Research Network
February 14, 2023
Dr. Gahl is the Director of the Undiagnosed Diseases Program, a Senior Investigator in the Medical Genetics Branch and...
Read moreBy Cystinosis Research Network
February 3, 2023
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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