It's a Rare Story
It's a Rare Story
Podcast Description
It's a Rare Story is a podcast dedicated to amplifying the voices of those living with rare diseases and disabilities. Hosted by Sarah, who underwent a life-changing bone marrow transplant for an ultra-rare Glycoprotein Storage Disease, Alpha-Mannosidosis. This channel features powerful stories of resilience, hope, and determination. Hear how individuals navigate their unique journeys and learn that a diagnosis doesn't define their future. We believe in the strength of shared experiences and the power of living life to the fullest, no matter what. Subscribe to join our community!
Podcast Insights
Content Themes
The podcast focuses on themes such as resilience, hope, and advocacy within the rare disease community. Episodes feature powerful narratives like Saida's story with Partial Trisomy 8q Duplication Syndrome and Sarah's own journey with Alpha-Mannosidosis, addressing both personal challenges and the broader implications of living with rare conditions.
It’s a Rare Story is a podcast dedicated to amplifying the voices of those living with rare diseases and disabilities. Hosted by Sarah, who underwent a life-changing bone marrow transplant for an ultra-rare Glycoprotein Storage Disease, Alpha-Mannosidosis. This channel features powerful stories of resilience, hope, and determination. Hear how individuals navigate their unique journeys and learn that a diagnosis doesn’t define their future. We believe in the strength of shared experiences and the power of living life to the fullest, no matter what. Subscribe to join our community!
On this week’s episode, Sarah sat down with Darcey. She was born with a Unilateral Cleft Lip and Palate. Darcey is 20 years old and currently entering her third year at the University of Missouri, where she is majoring in biochemistry. Her goal is to attend medical school and become a pediatric plastic surgeon with a focus on craniofacial reconstruction, inspired by her own journey.To learn more about the ELSA Act please visit: https://acpacares.org/advocacy/elsa/To support and to help advocate about the ELSA Act please visit: https://ujoin.co/campaigns/2473/actions/public?action_id=5391To stay up to date on everything she is up to, follow her on Instagram: @darcey_r__wright…Want your story to be featured on It’s a Rare Story? Contact us today at [email protected] us on:TikTok: @ItsARareStoryInstagram: @ItsARareStoryYouTube: @ItsaRareStory
Disclaimer
This podcast’s information is provided for general reference and was obtained from publicly accessible sources. The Podcast Collaborative neither produces nor verifies the content, accuracy, or suitability of this podcast. Views and opinions belong solely to the podcast creators and guests.
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