When it comes to Elle and cystinosis, “We continue to take each day dose by dose.” Hear more from...
Read moreBy Cystinosis Research Network
January 16, 2020
I do not have one story or just one person I can point out as a #GreatGiver. I am...
Read moreBy Cystinosis Research Network
December 3, 2019
The person I’m most grateful for is my sister Jennifer. Six and a half years ago my labs were...
Read moreBy Cystinosis Research Network
December 3, 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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