Meet Lily - Advocating through Community Artwork

Not So Rare Podcast

It is estimated that over 300 million people are affected globally by rare diseases. Although each rare disease only affects a small group of individuals, we believe that by sharing our experiences living with a rare disease, we can help the broader rare disease community with their rare disease journeys. Join us, Taylor and Liz, as we further explore the impact of rare diseases on our lives. Together we are 'Not so Rare!' Looking for updates or a way to connect with Taylor and Liz? Look for us on Instagram by following @NotSoRarePodcast as well as on Facebook by searching for Not So Rare Podcast. Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!

All Episodes

Not So Rare Podcast

Meet Lily - Advocating through Community

January 22, 2023 • Taylor and Liz • Season 1 • Episode 39

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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