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
Kandungan disediakan oleh Sano Genetics. Semua kandungan podcast termasuk episod, grafik dan perihalan podcast dimuat naik dan disediakan terus oleh Sano Genetics atau rakan kongsi platform podcast mereka. Jika anda percaya seseorang menggunakan karya berhak cipta anda tanpa kebenaran anda, anda boleh mengikuti proses yang digariskan di sini https://ms.player.fm/legal.
Player FM - Aplikasi Podcast
Pergi ke luar talian dengan aplikasi Player FM !
Pergi ke luar talian dengan aplikasi Player FM !
EP 126: Patient-led research for ultra-rare disease drug development with Julia Taravella, Executive Director of Rare Trait Hope Fund
MP3•Laman utama episod
Manage episode 406430447 series 2631947
Kandungan disediakan oleh Sano Genetics. Semua kandungan podcast termasuk episod, grafik dan perihalan podcast dimuat naik dan disediakan terus oleh Sano Genetics atau rakan kongsi platform podcast mereka. Jika anda percaya seseorang menggunakan karya berhak cipta anda tanpa kebenaran anda, anda boleh mengikuti proses yang digariskan di sini https://ms.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/.
169 episod
MP3•Laman utama episod
Manage episode 406430447 series 2631947
Kandungan disediakan oleh Sano Genetics. Semua kandungan podcast termasuk episod, grafik dan perihalan podcast dimuat naik dan disediakan terus oleh Sano Genetics atau rakan kongsi platform podcast mereka. Jika anda percaya seseorang menggunakan karya berhak cipta anda tanpa kebenaran anda, anda boleh mengikuti proses yang digariskan di sini https://ms.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/.
169 episod
Semua episod
×Selamat datang ke Player FM
Player FM mengimbas laman-laman web bagi podcast berkualiti tinggi untuk anda nikmati sekarang. Ia merupakan aplikasi podcast terbaik dan berfungsi untuk Android, iPhone, dan web. Daftar untuk melaraskan langganan merentasi peranti.