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X-WR-CALNAME:Cystinosis Research Network
X-ORIGINAL-URL:https://cystinosis.org
X-WR-CALDESC:Events for Cystinosis Research Network
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DTSTART:20190101T000000
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20200229
DTEND;VALUE=DATE:20200301
DTSTAMP:20260416T092705
CREATED:20200218T151504Z
LAST-MODIFIED:20200220T161841Z
UID:2358-1582934400-1583020799@cystinosis.org
SUMMARY:Podcast: Staying Positive while living with Cystinosis
DESCRIPTION:Welcome to our podcast series – Cystinosis Rare: A Journey into the Unknown. \nLead by the Adult Leadership Advisory Board (ALAB)\, this series will focus on issues specific to our rare disease. \nThe initial podcast episode launches on Rare Disease Day – February 29\, 2020. \nThis episode focuses on positive aspects and inspiring stories of adults living with cystinosis. There will be two featured guests: William Brink and Shannon Keizer. William (Bill) will discuss his journey and how his brother inspired him to start weightlifting. Shannon will share her experience from overcoming low mental health to working towards a nursing degree. \nALAB hosts will be Jana Healy\, Sara Healy\, Steve Scheudler\, and Cheryl Simoens. All four are adults living with cystinosis. \nThe episode will be approximately 1 hour in length. \nSubscribe to our YouTube page and receive an email alert when the podcast is available: http://bit.ly/2Y28tsx on Saturday\, February 29th. We hope you tune in!
URL:https://cystinosis.org/event/podcast-staying-positive-while-living-with-cystinosis/
CATEGORIES:Gatherings/Conferences
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