Get to Know Us Better - Part 2

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.

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

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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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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. 
 

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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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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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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.

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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.

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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.

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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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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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