#rarediseaseawareness

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.

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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.

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Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!

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Medical appointment anxiety does not end once you leave the doctor's office. This week Taylor and Liz discuss their experiences with post - appointment anxiety along with how they have learned to cope throughout their medical journies.

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Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!

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This week, Taylor and Liz are excited to have Lily join the podcast. Lily is living with VACTERL Association. In this week's episode, Lily discusses more about her disease along with sharing how she has worked to help support her own rare disease community. She also discusses an impactful camping experience that helped her build deeper connections. For more information related to VACTERL Association, please click here. Additionally, for more information related to camping experiences for youth living with bowel and/ or bladder system conditions, please click here.

Want to support and connect further with Taylor and Liz?

Follow and connect with us on Facebook and Instagram!
Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!

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As part of the second episode in their Rare Disease and Family Planning series, Taylor and Liz discuss the impact that rare diseases and treatments have had on Taylor's family planning. Topics included relating to the impact rare disease has had on her fertility and options available related to growing a family. 

Trigger Warning: Family Planning and Fertility Journey

Want to support and connect further with Taylor and Liz?

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Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!

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Welcome back to the final installment of the Rare Disease Myth Busters series! In this series of episodes, Taylor and Liz discuss their opinions and experiences with rare disease myths. Over the next several episodes, our hosts will break apart common myths and provide insights into how these myths are prevalent within their own lives as rare disease patients. Myths identified within this mini-series originated from a 2019 article appearing on The Mighty (25 Misconceptions About Living with a Rare Disease).

Looking for updates or a way to connect with Taylor and Liz? Look for us on Instagram at the NotSoRarePodcast as well as on Facebook at the NotSoRarePodcast. Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!

Want to support and connect further with Taylor and Liz?

Follow and connect with us on Facebook and Instagram!
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/ and show your support!

Welcome back to part 5 of the Rare Disease Myth Busters series! In this series of episodes, Taylor and Liz discuss their opinions and experiences with rare disease myths. Over the next several episodes, our hosts will break apart common myths and provide insights into how these myths are prevalent within their own lives as rare disease patients. Myths identified within this mini-series originated from a 2019 article appearing on The Mighty (25 Misconceptions About Living with a Rare Disease).

Looking for updates or a way to connect with Taylor and Liz? Look for us on Instagram at the NotSoRarePodcast as well as on Facebook at the NotSoRarePodcast. Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!

Want to support and connect further with Taylor and Liz?

Follow and connect with us on Facebook and Instagram!
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/ and show your support!

Taylor and Liz thought it would be fun to get to know both of them a little bit better. In this part two episode, they answer the second half of questions inspired by Vogue Magazine as interpreted by Oui in Paris.

Looking for updates or a way to connect with Taylor and Liz? Look for us on Instagram at the NotSoRarePodcast as well as on Facebook at the NotSoRarePodcast. Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!

Want to support and connect further with Taylor and Liz?

Follow and connect with us on Facebook and Instagram!
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/ and show your support!