#raredisease

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.

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!

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.

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!

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.

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!

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!

Visit our official merchandise store at https://www.bonfire.com/store/not-so-rare-podcast-store/ and show your support!

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!

@RareDiseaseDad and DadVocate are the monikers for Adam Johnson who is now a rare disease patient advocate who hosts a podcast called Parents As Rare that features stories of others like him who are affected by rare or chronic diseases.  Host Annette Hines and Johnson discuss a range of topics relating to the struggle that he faced in 2019 when his symptoms related to mitochondrial disease started emerging in the prime of his education career and family life as a husband and dad.  Although advocacy or rare disease were not in the realm of possibility for him previously, today Johnson's advocacy and voice related to how parents with rare diseases manage their diagnosis, lives, and grief unite others in the disability world.  You can listen to the Parents As Rare podcast and read more about Adam Johnson on his website: rarediseasedad.com or on Twitter and Instagram by his handle: @RareDiseaseDad

We would love to hear what you think about this episode. Please leave a review or post a comment on our website: https://specialneedscompanies.com/podcasts

Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.