How can we, humans, look at our relationship to nature differently? In season three of Going Wild, on top of stories about animals, we invite you to journey through the entire ecological web — from the tiniest of life forms to apex predators — alongside the scientists, activists and adventurers who study it. Wildlife biologist and host Dr. Rae Wynn-Grant has been studying wild animals in their natural habitats all over the world for years. Our award-winning podcast takes you inside the hidde ...
…
continue reading
Innhold levert av Sano Genetics. Alt podcastinnhold, inkludert episoder, grafikk og podcastbeskrivelser, lastes opp og leveres direkte av Sano Genetics eller deres podcastplattformpartner. Hvis du tror at noen bruker det opphavsrettsbeskyttede verket ditt uten din tillatelse, kan du følge prosessen skissert her https://no.player.fm/legal.
Player FM - Podcast-app
Gå frakoblet med Player FM -appen!
Gå frakoblet med Player FM -appen!
EP 126: Patient-led research for ultra-rare disease drug development with Julia Taravella, Executive Director of Rare Trait Hope Fund
MP3•Episoder hjem
Manage episode 406430447 series 2631947
Innhold levert av Sano Genetics. Alt podcastinnhold, inkludert episoder, grafikk og podcastbeskrivelser, lastes opp og leveres direkte av Sano Genetics eller deres podcastplattformpartner. Hvis du tror at noen bruker det opphavsrettsbeskyttede verket ditt uten din tillatelse, kan du følge prosessen skissert her https://no.player.fm/legal.
0:00 Introduction
0:25 Julia’s personal experience with ultra-rare diseases within her family
10:25 The importance of increasing accessibility to genetic testing across populations to learn more about ultra-rare diseases
14:00 The origin story of Rare Trait Hope Fund
23:50 Current research and next steps in developing potential gene therapies for aspartylglucosaminuria
32:20 How best to applykey insights and best practices to improve the approach to ultra-rare disease treatment development
38:30 Next steps for Rare Trait Hope Fund and how people can help with Julia’s mission
44:00 Julia’s advice for families who are advocating for rare disease research and therapy development
46:50 Closing remarks
For more information on Rare Trait Hope Fund, please visit: https://www.raretrait.com/.
182 episoder
MP3•Episoder hjem
Manage episode 406430447 series 2631947
Innhold levert av Sano Genetics. Alt podcastinnhold, inkludert episoder, grafikk og podcastbeskrivelser, lastes opp og leveres direkte av Sano Genetics eller deres podcastplattformpartner. Hvis du tror at noen bruker det opphavsrettsbeskyttede verket ditt uten din tillatelse, kan du følge prosessen skissert her https://no.player.fm/legal.
0:00 Introduction
0:25 Julia’s personal experience with ultra-rare diseases within her family
10:25 The importance of increasing accessibility to genetic testing across populations to learn more about ultra-rare diseases
14:00 The origin story of Rare Trait Hope Fund
23:50 Current research and next steps in developing potential gene therapies for aspartylglucosaminuria
32:20 How best to applykey insights and best practices to improve the approach to ultra-rare disease treatment development
38:30 Next steps for Rare Trait Hope Fund and how people can help with Julia’s mission
44:00 Julia’s advice for families who are advocating for rare disease research and therapy development
46:50 Closing remarks
For more information on Rare Trait Hope Fund, please visit: https://www.raretrait.com/.
182 episoder
Alle episoder
×Velkommen til Player FM!
Player FM scanner netter for høykvalitets podcaster som du kan nyte nå. Det er den beste podcastappen og fungerer på Android, iPhone og internett. Registrer deg for å synkronisere abonnement på flere enheter.