Not So Rare Podcast

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 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 a...

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 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://ww...

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 Want to support and connect further with Taylor and Liz? Follow and connect with us on Facebook and Instagram ! Also,...

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 Want to support and connect further with Taylor and...

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 Want to support and connect further with Taylor and Liz? Follow and connect with us on Facebook and I...

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. Support the show 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...

Join Taylor and Liz as they discuss fundraising as it relates to the rare disease patient population. Focus is placed on the patient's role in fundraising efforts along with the impact fundraising has on both patients and their families. Support the show Want to support and connect further with Taylor and Liz? Follow and connect with us on Facebook and Instagram ! Also, feel free to message u...

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 Asso...

Join Taylor and Liz this week as they discuss a recent key medical appointment where Taylor explores utilizing dual therapy to help control her disease and symptoms. Support the show 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 o...

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 Support the show Want to...

Taylor and Liz have been taking some time over the Thanksgiving and Winter holidays to spend time with their family and friends. Listen to this week's episode to hear more about how they enjoy the holidays while managing their 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 NotSoRarePodca...

Rare disease patients often see many different specialists to help manage their disease. This week, Taylor and Liz discuss the challenges that new patients experience when visiting a new specialist for the first time. 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 mess...

Taylor and Liz thought this would be a good week to catch up after having a small break. Topics this week range from vacation updates, fertility journey progress, experiencing COVID with a rare disease, and so much more! 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 m...

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-ser...

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...

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...

Taylor and Liz are excited to have Lindsay join the podcast as part of this week's episode. Lindsay is a young adult who shares her experiences both being diagnosed as well as living with CLOVES. CLOVES stands for Congenital, Lipomatous, Overgrowth, Vascular Malformations, Epidermal Nevi and Spinal/Skeletal Anomalies and/or Scoliosis. Thank you for sharing your story with our community Lindsa...

Taylor and Liz thought it would be fun to get to know both of them a little bit better. In this part one episode, they answer the first 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...

Rare Disease patients and their families often need to plan differently when considering options surrounding growing their family. Taylor and Liz are passionate about starting the conversation with rare disease patients of all ages. This is the first episode in a new series of episodes dedicated to options available when considering family planning. Our hope is that through hearing our stories, we...

This week Taylor and Liz are really excited to have Sara join and share the story of her journey with her son who was born with Imperforate Anus. Sara shares her journey in finding care for her son's rare condition. Additionally, Sara provides details on key information for families sending their rare disease kids back to school. Click here if interested in learning more about Imperforate Anu...

Taylor and Liz are joined by special guest Chris who shares her journey living with Hypertrophic Olivary Degeneration as well as Sporadic Cerebral Cavernous Malformations. Chris has worked hard to build connections across the patient and medical community to raise awareness and increase research on her disease. If interested in learning more, please refer to https://hodassoc.org/ . Thanks for join...

Welcome back to part 4 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 on how these myths are prevalent within their own lives as rare disease patients. Myths identified within this mini-series originated fr...

In this week's surprise bonus episode, Taylor and Liz meet with fellow rare disease patient, Leeya, who had the wonderful experience of studying abroad this past year. Thanks, Leeya, for sharing your experiences managing your disease while exploring the world! 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 a...

Taylor and Liz are excited to invite Emily to this week's podcast episode. Emily shares her inspiring story of navigating her daughter's diagnosis and establishing a treatment plan. Throughout her story, it is evident that there are creative roles that the young patient and all members of the family can serve in both treatment and patient advocacy. Thank you for joining us this week Emil...

This week's episode is targeted at our audience of rare disease parents. Taylor and Liz discuss ways to help parents enable their kids with a rare disease to take ownership of their care and treatment plans. Managing care and treatment is overwhelming for all of us, and finding ways to help with this at a young age can make for a smoother transition. Looking for updates or a way to connect wi...