Tag: ALAB

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Cystinosis Sessions: March Video Call

All are invited to join as the Adult Leadership Advisory Board hosts a live video call on Saturday, March...

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Rare Disease Day 2021

The goal of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on...

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Cystinosis Sessions: January Video Call

All are invited to join as the Adult Leadership Advisory Board hosts our live January video call. This session...

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Cystinosis Sessions:

Saturday, December 5th at 12:00 pm ET, the Adult Leadership Advisory Board (ALAB) will host a live video conference....

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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 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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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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Open Registration – 2020 Cystinosis Virtual Meetups

We are going virtual! The CRN is introducing a series of virtual meetups taking place this fall. Available to...

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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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