Tag: cystinosis

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Miles for Moose

Support the first annual Miles for Moose fundraiser.

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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 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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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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Podcast: Youth to Adult Transition (part 2)

Youth to Adult Transition Part 2- Q &A Panel with Adults Living with Cystinosis Part two of the youth...

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Podcast: Youth to Adult Transition (part 1)

Youth to Adult Transition Part 1- Discussion with Medical Professionals The third podcast from the ALAB will focus on...

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Cystinosis Sessions: Exercise

The Cystinosis Sessions live video series continues on Saturday, August 1st from 12:00pm – 1:30pm ET. The Adult Leadership...

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Cystinosis Sessions: Mental Health

The forth live video conference hosted by the Adult Leadership Advisory Board (ALAB) will discuss Mental Health, Anxiety, Depression,...

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Second Patient Dosed in Gene Therapy Trial

AVROBIO announces the second patient with cystinosis has been dosed in the company’s AVR-RD-04 investigational gene therapy Phase 1/2...

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