Tag: cystinosis

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Miles for Moose

Support the first annual Miles for Moose fundraiser.

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AVROBIO: Cystinosis Gene Therapy Update Functional & Clinical Improvements Reported

November 17, 2020 – AVROBIO announced that data suggests functional and clinical improvements for the first cystinosis patient at...

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Cystinosis Sessions: Diet & Nutrition

Join the Adult Leadership Advisory Board (ALAB) for the Cystinosis Sessions video conference series – LIVE- on Saturday, November...

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Cystinosis Gene Therapy & Research Updates: Virtual Meetup

Learn more about gene therapy as it relates to the cystinosis community. Dr. Paul Grimm from from Stanford University...

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Cystinosis & Mental Health: Virtual Meetup

Let’s have an open discussion on mental health and living with cystinosis. Everyone within the community is invited! Licensed...

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Cystinosis Sessions: Alternative Therapies, Exercise & Activities

Join hosts from the Adult Leadership Advisory Board (ALAB) for the Cystinosis Sessions video conference series – LIVE- on...

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Playback – 2020 International Cystinosis Family Conference 

In April, the Cystinosis Network Europe adapted their international conference to the restrictions set forth by COVID-19. The result...

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Cystinosis Basics: Virtual Meetups

Learn more about the fundamentals of cystinosis during our Cystinosis Basics video meetup. Dr. Larry Greenbaum, Emory School of...

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Recordati Announces Availability of CYSTADROPS in the U.S.

Beginning September 15, 2020, Recordati Rare Diseases announced the availability of CYSTADROPS across the United States. CYSTADROPS are a...

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Caregivers Connect: Virtual Meetup

Caregivers of children with cystinosis under 18 years old are invited. Join us for a video conference to connect...

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