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Cystinosis Sessions: April Video Call

Cystinosis Sessions: April Video Call All are invited to join as the Adult Leadership Advisory Board hosts a live...

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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:

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: 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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Cystinosis Sessions: Overcoming Limitations & Goal Setting

The third live video conference takes place June 6 at 12:00 pm ET. The Adult Leadership Advisory Board (adults...

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Advocating For Our Daughter’s Rare Disease

Advocating for rare disease sometimes feels like fighting an uphill battle. Living with cystinosis means you are 1 in...

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Podcast Discussion: Coping with Loss & Grief

Tune into the ALAB's Podcast series as we discuss how to cope with loss and grief.

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Live Video Conference: Dependence, Education & Employment

Join the LIVE video conference session on May 2nd!

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Cystinosis Sessions: Coronavirus, Medication

Join the first video conference session created by the Adult Leadership Advisory Board - Saturday, March 21 at 4pm...

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