As of October 6, 2023, Amgen officially acquired Horizon Therapeutics. For our cystinosis community using PROCYSBI as a therapeutic...
Read moreBy Cystinosis Research Network
November 6, 2023
The long awaited Cystinosis Advocate Newsletter is here. Choose from research updates, advocacy efforts, family stories, events, cystinosis support...
Read moreBy Cystinosis Research Network
November 6, 2023
In May 2023, Novartis acquired the investigational autologous hematopoietic stem cell (HSC) gene therapy program for the treatment of...
Read moreBy Cystinosis Research Network
October 27, 2023
Celebrate Halloween from home this year. ALAB invites you to a free, online event that will test your spooky...
Read moreOn October 21, 2023, the Advanced Therapies Program will host the 9th Annual WORLDFair. Open to both patients and...
Read moreHealogix Market Research would like to hear from the cystinosis community. If you use *or have used* Cystadrops and...
Read moreResearchers, clinicians, industry and advocacy representatives attending CRN Nashville have been invited to exhibit research findings, treatment breakthroughs, and...
Read moreBy Jonathan Dicks, CRN President and VP Development I recently had the privilege of attending the three-night Raregivers Men’s...
Read moreJoin us on the Raising Rare podcast featuring a young adult and caregiver living with cystinosis. The podcast episode...
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