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Unravel Biosciences
Приєднався 17 жов 2023
UnravelingRare Ep04: CHOPS Syndrome and Synergies in Drug Development
In our fourth episode of @UnravelBiosciences UnravelingRare Podcast we speak with Manuela Mallamaci, Founder of the CHOPS Syndrome Foundation (fondazionechopsets.com/en/) and mother of a child with CHOPS Syndrome. Learn how the foundation was enabled by a strong network of mothers of CHOPS patients and some insightful clinicians. Manuela describes their effort to bring about a massive change in how CHOPS and other disorders can be more efficiently treated using both repurposed and novel therapeutics.
www.rareshift.org/
www.rareshift.org/
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UnravelingRare Ep03: Stratifying AP-4 Spastic Paraplegias to Accelerate Therapies
Переглядів 907 місяців тому
In our third episode, we speak with Kasey Edwards, Community Relations Coordinator at the Cure AP-4 Foundation (cureap4.org/) and mother of a child with SPG47, one of the four genes that make up AP-4 spastic paraplegias. Learn about the foundation's incredible work to tackle four disorders at once by finding shared treatments among them and by linking these ultra-rare disorders to less rare, an...
UnravelingRare Ep02: Boys with Rett syndrome
Переглядів 5279 місяців тому
In our second episode, we speak with Ben and Arlene Chrisman and their son, Luke, who is one of very few boys with Rett syndrome. Learn about their particular challenges in a disorder mostly associated with girls and what they are doing to get Luke treatment to fight his unique condition. www.rareshift.org/
UnravelingRare Ep01: Rett Syndrome in Latin America
Переглядів 1739 місяців тому
In our first episode of Unraveling Rare, Unravel's rareSHIFT Alliance Manager, Eleni Pitsiniaga, speaks with Maria Carrasquilla, founder of Rett Latina, and her daughter, Helena, about the challenges they face with Rett syndrome and the efforts Maria has undertaken to call attention to Rett syndrome across the Latin American region. www.rareshift.org/
Proud of you two for fighting for Luke!