By Jonathan Dicks, CRN President and VP Development I recently had the privilege of attending the three-night Raregivers Men’s...
Read moreBy Cystinosis Research Network
June 18, 2023
Join us on the Raising Rare podcast featuring a young adult and caregiver living with cystinosis. The podcast episode...
Read moreBy Cystinosis Research Network
May 8, 2023
Hello! My name is Gracie, I’m 21 years old, and I have a rare disease called cystinosis. Cystinosis is...
Read moreBy Cystinosis Research Network
April 27, 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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