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I Am Not My Disease by Steve Schleuder

Life with a chronic disease can be stressful to say the least. My most frustrating moments are when I’m...

They say sometimes it takes a village to help raise children, for us that village included two beautiful women....

My daughter, Deanna Lynn, was diagnosed with cystinosis 46 years ago in Houston, TX. At that time I did...

The great givers in my life are my family. I was born with a rare kidney disease known within...

What started as a cystinosis awareness effort turns into a life-changing encounter. It all started with Jana (my twin...

For the fifth consecutive year, the CRN is a proud participant in Giving Tuesday – a day encouraging people...

Global Genes 2019 RARE Patient Advocacy Summit was attended by members of our cystinosis community. Natasha Faisca and Clinton...

AVROBIO has released a brochure providing detail on investigational gene therapies for lysosomal storage disorders. Earlier this year, AVROBIO’s...

AVROBIO has announced the first patient has been dosed in the company’s Phase 1/2 trial of AVR-RD-04, an investigational...

This three part series is a one-of-a-kind resource for children AND adults curious about cystinosis. Each installment was carefully...