Advocacy

Rare Disease and Family Planning - Part 4

This week Taylor and Liz revisit their Rare Disease and Family Planning mini-series. In this episode, Taylor shares some exciting updates on her journey. We also revisit Liz's story. 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!

Life Update from Taylor & Liz

Taylor and Liz use this week's episode to provide an update on what is new with their lives over the last several months. 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!

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!

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!

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!