Tag: cystinosis

Search
Generic filters
Exact matches only

Cystinosis Sessions: July Video Call

Founding ALAB member, Brian Ensor shares his first-hand experiences with the AstraZeneca Vaccination Study. Join the Zoom call Saturday,...

read more

CNE International Conference

This summer, Cystinosis Network Europe (CNE) will host an International Conference July 7-10 in Leuven, Belgium. The conference will...

read more

2nd Annual SC Golf Fundraiser

Gail Potts and her South Carolina team are back at it! After a successful inaugural event last summer, Gail...

read more

AVROBIO Reports Positive Data From Phase 1/2 Clinical Trial of Investigational Gene Therapy for Cystinosis, Including New Interim Data on Neurocognitive Measures

Press release originally published May 17, 2022 on Avrobio.com. New early data show key visual motor integration, visual perception...

read more

5th Annual Cystinosis Awareness Day

On May 7, 2022 we celebrate the 5th Annual Cystinosis Awareness Day. This is an opportunity to educate the...

read more

Q & A on Cystaran Eye Drops

Leadiant, the makers of Cystaran eye drops, are opening up the floor for a Town Hall Q&A on Wednesday,...

read more

Study Participants Needed: The Effect of Exercise on Muscle Dysfunction in Cystinosis

Clinical researchers from the Stanford Neuromuscular department are looking for individuals who have been diagnosed with Cystinosis Myopathy, to...

read more

Cystinosis Sessions: April Video Call

Diet and exercise will be the next topics of conversation during the Cystinosis Sessions quarterly Zoom call. Join our...

read more

Newborn Screening: Review of its Impact for Cystinosis

Could newborn screening provide a turning point in the natural history of cystinosis? Review the latest publication “Newborn Screening: Review of...

read more

Rare Disease Day 2022

February 28th marks the 12th annual Rare Disease Day (RDD). Observed on the rarest day of the year, the...

read more