Podcasts by Cystinosis Rare: A Journey Into the Unknown
A podcast for the Cystinosis community and general public, sharing experiences and both educating and supporting the affects of this rare kidney disease.
Credits:
Steve Scheudler, Jana Healy, Sara Healy, Cheryl Simoens
Further podcasts by CRN: Adult Leadership Board
Podcast on the topic Gesundheit und Fitness
All episodes
Cystinosis Rare: A Journey into the Unknown - Episode 5: Parent Panel Discussion from 2020-12-13T19:08:29
Episode 5 of the Cystinosis Rare podcast focuses on parents speaking candidly about their experiences of having children with cystinosis; their journeys, challenges, and inspiration.
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Cystinosis Rare: A Journey into the Unknow - Episode 4 from 2020-11-29T18:03
Episode 4 focuses on a panel of 4 adults living with cystinosis speaking up about their experiences on bullying, teasing, and negative social impacts and how they managed to cope throughout thei...
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Transitioning from Youth to Adult through the medical system: Episode 3 - Part 2 from 2020-08-22T13:00
This episode focus's on living within Cystinosis transitioning out of youth and into adult care. Topics include medication routine and side effects, support systems and taking on a more in...
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Transitioning from Youth to Adult through the medical system from 2020-08-15T13:00
Part 1 of Episode 3 focuses on healthcare professionals speaking about challenges and guidance for youth transitioning to adult care on their journey with cystinosis.
Guest Speakers...
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Cystinosis Rare: A Journey into the Unknown - Episode 2: Part 3 - "Discussion on coping during Covid-19" from 2020-05-07T12:24:03
Grief and loss in the Cystinosis community with a Q&A section facilitated by a certified social worker and professor with many years of experience in the Cystinosis community. We also share ...
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Cystinosis Rare: A Journey into the Unknown - Episode 2: Part 2 - "Q&A with Maya Doyle" from 2020-05-07T12:18:08
Grief and loss in the Cystinosis community with a Q&A section facilitated by a certified social worker and professor with many years of experience in the Cystinosis community. We also share ...
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Cystinosis Rare: A Journey into the Unknown - Episode 2: Part 1 - "Intro: Host Stories" from 2020-05-07T12:14:44
Grief and loss in the Cystinosis community with a Q&A section facilitated by a certified social worker and professor with many years of experience in the Cystinosis community. We also share ...
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Cystinosis Rare: A Journey into the Unknown from 2020-02-29T06:00
Our first episode focuses on positive aspects and inspiring stories of adults living with Cystinosis.
We have two guest appearances, our first guest is William Brink sharing his sto...
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