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Cystinosis Sessions: August Video Call

The Adult Leadership Advisory Board (ALAB) invites you to join the conversation on August 7th at 4pm ET. The...

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

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

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

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

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

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

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

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

Join the LIVE video conference session on May 2nd!