Cystinosis patients and caregivers are invited to participate in a study focused on measuring health-related quality of life (HrQoL)....
read moreThe Rare Diseases Clinical Research Network (RDCRN) is hoping to learn how the COVID-19 pandemic impacts people who live...
read moreAdvocating for rare disease sometimes feels like fighting an uphill battle. Living with cystinosis means you are 1 in...
read moreI first heard of cystinosis in 2016. It was Spring, I felt. Or it should have been—life metamorphoses are...
read moreLife with a chronic disease can be stressful to say the least. My most frustrating moments are when I’m...
read moreThey say sometimes it takes a village to help raise children, for us that village included two beautiful women....
read moreThe great givers in my life are my family. I was born with a rare kidney disease known within...
read moreSupport the first annual Miles for Moose fundraiser.
read moreGlobal Genes 2019 RARE Patient Advocacy Summit was attended by members of our cystinosis community. Natasha Faisca and Clinton...
read moreFollowing much consideration, Cystinosis Network Europe (CNE) and Cystinosis Ireland have decided to cancel the in-person International Cystinosis Conference...
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