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August 2020

Podcast: Youth to Adult Transition (part 1)

August 15

Youth to Adult Transition Part 1- Discussion with Medical Professionals The third podcast from the ALAB will focus on transitioning from youth to adult medical care. Part one of the youth to adult transition conversation begins with the healthcare professional opinion. Join us and special guests Dr. Paul Grimm from Lucile Packard Children's Hospital and Stanford University of Medicine and Dori Rivera, PAM (Patient Access Manager) from Horizon Therapeutics. Hosts from the Adult Leadership Advisory Board (ALAB) are Jana Healy,…

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Podcast: Youth to Adult Transition (part 2)

August 22

Youth to Adult Transition Part 2- Q &A Panel with Adults Living with Cystinosis Part two of the youth to adult transition discussion is focused on personal experiences of adults living with cystinosis. Joining our panel on behalf of the adult community are Serena Scott (via mum Sue Scott), Kevin McCalla, Ashley Abedini, and Joe Rumney. Hosts from the Adult Leadership Advisory Board (ALAB) are Jana Healy, Sara Healy, Steve Schleuder, Cheryl Simoens. Please check back. Link to podcast coming…

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May 2021

Miles for Moose

May 8, 2021 @ 8:00 am - 8:00 pm
Thompson Park Pavilion (Family Gathering Site), 1 Thompson Park
Watertown, NY 13601 United States
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Support the first annual Miles for Moose fundraiser.

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July 2021

2021 Family Conference

July 15, 2021 - July 19, 2021
Nashville Airport Marriott, 600 Marriott Dr
Nashville, 37214 United States
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Mark your calendars for the 2021 CRN Family Conference!

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