Cystinosis patients and caregivers are invited to participate in a study focused on measuring health-related quality of life (HrQoL)....
Read moreBy Cystinosis Research Network
December 14, 2022
Men 18+ living with nephropathic cystinosis are currently being recruited for a research study, Clinical and Molecular Assessments of...
Read moreBy Cystinosis Research Network
November 2, 2022
The Cystinosis Research Network announces the expansion of our Board with two new Directors. Their experience, perspectives and dedication...
Read moreBy Cystinosis Research Network
October 20, 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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