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The Rare Disorder Podcast
Shivani Vyas
43 episodes
1 day ago
The Rare Disorder Podcast is a podcast created by Shivani Vyas, a high school senior, young changemaker, and rare disease advocate, dedicated to spreading awareness for rare diseases. This podcast is divided into 2 main series. In the "Meet a Fighter," Shivani interviews patients and those affected by rare diseases allowing them to share their inspirational stories. In "Meet An Expert/Partner," Shivani interviews public health experts, rare disease organization leaders, rare advocacy leaders, and more! Check out my other initiatives and platforms: https://linktr.ee/theraredisorderpodcast
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Natural Sciences
Science
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All content for The Rare Disorder Podcast is the property of Shivani Vyas and is served directly from their servers with no modification, redirects, or rehosting. The podcast is not affiliated with or endorsed by Podjoint in any way.
The Rare Disorder Podcast is a podcast created by Shivani Vyas, a high school senior, young changemaker, and rare disease advocate, dedicated to spreading awareness for rare diseases. This podcast is divided into 2 main series. In the "Meet a Fighter," Shivani interviews patients and those affected by rare diseases allowing them to share their inspirational stories. In "Meet An Expert/Partner," Shivani interviews public health experts, rare disease organization leaders, rare advocacy leaders, and more! Check out my other initiatives and platforms: https://linktr.ee/theraredisorderpodcast
Show more...
Natural Sciences
Science
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23. Meet a Partner: The Rare Disorder Podcast X Our Odyssey ft. Anna Laurent, Head of Programs
The Rare Disorder Podcast
35 minutes 11 seconds
4 years ago
23. Meet a Partner: The Rare Disorder Podcast X Our Odyssey ft. Anna Laurent, Head of Programs

In this episode, I chat with Anna Laurent, who is the Head of Programs and Initiatives at Our Odyssey, an organization which aims to connect young adults impacted by a rare or chronic condition with social and emotional support in the hope of improving their quality of life. Our Odyssey's vision is to establish a national organization with a platform that empowers, educates, and connects young adults experiencing health challenges. After becoming involved in numerous patient advocacy organizations, she found a lack of resources supporting young adults and this ignited her passion for uplifting the needs and voices of young adults. Anna has lobbied on Capitol Hill leading a team of Kentuckians advocating for vital rare disease and healthcare legislation. The culmination of this work led to Anna becoming the Head of Programs and Initiatives at Our Odyssey, an organization connecting young adults impacted by rare or chronic conditions with social and emotional support in the hope of improving their quality of life. She is a powerful advocate, educator, and speaker and plans to continue advocating for years to come!

Anna, herself, battles Alagille syndrome, an inherited condition in which bile builds up in the liver because there are too few bile ducts to drain the bile, thus resulting in liver damage. She is deeply involved in advocacy efforts and strives to bring awareness to this rare condition. 

Learn more about Our Odyssey and get involved!

Website: https://ourodyssey.org/

Instagram: https://www.instagram.com/_ourodyssey_/

The Rare Disorder Podcast
The Rare Disorder Podcast is a podcast created by Shivani Vyas, a high school senior, young changemaker, and rare disease advocate, dedicated to spreading awareness for rare diseases. This podcast is divided into 2 main series. In the "Meet a Fighter," Shivani interviews patients and those affected by rare diseases allowing them to share their inspirational stories. In "Meet An Expert/Partner," Shivani interviews public health experts, rare disease organization leaders, rare advocacy leaders, and more! Check out my other initiatives and platforms: https://linktr.ee/theraredisorderpodcast