Anna Laurent on Alagille Syndrome and Her Road to Advocacy
Once Upon A Gene
Anna Laurent on Alagille Syndrome and Her Road to Advocacy My guest today has a rare genetic disorder called Alagille Syndrome, which she was diagnosed with at 6 months old with no prognosis. Anna Laurent is a vivacious 20 year old living her best life. She's the Head of Programs & Initiatives at Our Odyssey where she helps to empower young adults impacted by chronic and rare diseases. If you know a young person with a chronic or rare disease, tell them to check out Our Odyssey. EPISODE HIGHLIGHTS Can you share some of the excitement you've had in your life over the last 6 months? Tell us your story and about the diagnosis you were given as a child. What was it like growing up with a rare disease? What led you to become an advocate and to help other young people? What has been one of your most moving experiences so far? Do you have any advice for parents? LINKS AND RESOURCES MENTIONED Our Odyssey https://ourodyssey.org/ Alagille Syndrome Alliance https://alagille.org/ TUNE INTO THE ONCE UPON A GENE PODCAST Spotify Apple Podcasts Stitcher Overcast CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/
Fecha de Publicación: 25 de junio de 2020
Duración: 38 min
Añadir a Playlist
Episodios Relacionados
-
Preconception & Prenatal Genetic Testing 101: A Conversation with Genetic Counselor, Natalie Richheimer
enero 16, 2025 -
Transforming Pediatric Rare Disease Research: Dr. Ramin Eskandari on Neurosurgery, Biorepositories, and Empowering Families and Medical Teams to Save Residual Samples
enero 9, 2025 -
Eight Years of Searching: A Determined Family’s Quest to Cure an Ultra-Rare CLCN6 Mutation with Kristin & Paul Purdy
enero 2, 2025 -
Chasing Glimmers - From Grief to Glitter: Parenting Through Infantile MLD and Embracing Life’s Full Spectrum - with Megan Gillet
diciembre 19, 2024 -
The Gift of Grace: A Holiday Heart-to-Heart for Caregivers
diciembre 12, 2024