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Not So Rare Podcast

Podkast av Taylor and Liz

engelsk

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Les mer Not So Rare Podcast

It is estimated that over 300 million people are affected globally by rare diseases. Although each rare disease only affects a small group of individuals, we believe that by sharing our experiences living with a rare disease, we can help the broader rare disease community with their rare disease journeys. Join us, Taylor and Liz, as we further explore the impact of rare diseases on our lives. Together we are 'Not so Rare!' Looking for updates or a way to connect with Taylor and Liz? Look for us on Instagram by following @NotSoRarePodcast as well as on Facebook by searching for Not So Rare Podcast. Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!

Alle episoder

49 Episoder

episode Advocacy cover

Advocacy

In this week's episode, Taylor and Liz discuss their own path in identifying ways to be advocates for their Rare Disease. When choosing ways to help your rare disease community, consider identifying advocacy areas that interest you and can have a broad impact. Support the show [https://www.bonfire.com/store/not-so-rare-podcast-store/] Want to support and connect further with Taylor and Liz? Follow and connect with us on Facebook [https://www.facebook.com/notsorarepodcast] and Instagram [https://www.instagram.com/notsorarepodcast/]! Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you! Visit our official merchandise store at https://www.bonfire.com/store/not-so-rare-podcast-store/ [https://www.bonfire.com/wear-your-rare/] and show your support!

16. april 2023 - 20 min
episode THE Not So Rare Mom cover

THE Not So Rare Mom

You have heard Taylor and Liz's story, this week we are excited to have THE Not So Rare Mom join the podcast. Taylor's mom joins to share her perspective as a Rare Disease Mom while supporting her daughter through her education and life milestones while also supporting her diagnostic, clinical, and advocacy journeys.    Support the show [https://www.bonfire.com/store/not-so-rare-podcast-store/] Want to support and connect further with Taylor and Liz? Follow and connect with us on Facebook [https://www.facebook.com/notsorarepodcast] and Instagram [https://www.instagram.com/notsorarepodcast/]! Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you! Visit our official merchandise store at https://www.bonfire.com/store/not-so-rare-podcast-store/ [https://www.bonfire.com/wear-your-rare/] and show your support!

24. mars 2023 - 32 min
episode Challenges of the Self-Diagnosed cover

Challenges of the Self-Diagnosed

Many rare disease patients struggle with obtaining a diagnosis for their disease. Often this leaves patients trying to research on their own in order to help the process. Taylor and Liz this week discuss the challenges and impacts of patients who have self-diagnosed their disease. Support the show [https://www.bonfire.com/store/not-so-rare-podcast-store/] Want to support and connect further with Taylor and Liz? Follow and connect with us on Facebook [https://www.facebook.com/notsorarepodcast] and Instagram [https://www.instagram.com/notsorarepodcast/]! Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you! Visit our official merchandise store at https://www.bonfire.com/store/not-so-rare-podcast-store/ [https://www.bonfire.com/wear-your-rare/] and show your support!

26. feb. 2023 - 21 min
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