Artwork

RARECast에서 제공하는 콘텐츠입니다. 에피소드, 그래픽, 팟캐스트 설명을 포함한 모든 팟캐스트 콘텐츠는 RARECast 또는 해당 팟캐스트 플랫폼 파트너가 직접 업로드하고 제공합니다. 누군가가 귀하의 허락 없이 귀하의 저작물을 사용하고 있다고 생각되는 경우 여기에 설명된 절차를 따르실 수 있습니다 https://ko.player.fm/legal.
Player FM -팟 캐스트 앱
Player FM 앱으로 오프라인으로 전환하세요!

A Software Platform to Give Patients the Tools to Build Treatments for Rare Genetic Diseases

30:25
 
공유
 

Manage episode 288390846 series 60790
RARECast에서 제공하는 콘텐츠입니다. 에피소드, 그래픽, 팟캐스트 설명을 포함한 모든 팟캐스트 콘텐츠는 RARECast 또는 해당 팟캐스트 플랫폼 파트너가 직접 업로드하고 제공합니다. 누군가가 귀하의 허락 없이 귀하의 저작물을 사용하고 있다고 생각되는 경우 여기에 설명된 절차를 따르실 수 있습니다 https://ko.player.fm/legal.

Sanath Kumar Ramesh’s son Raghav was born with an ultra-rare and progressive disorder known as SSMD. The condition is caused by mutations in the GPX4 gene. There are only a handful of known patients with GPX4 mutations. In the past, most known cases resulted in death about a month after birth. Ramesh has moved with remarkable speed to find patients, raise money, and drive research. But he also realized that many other parents of children and small, rare disease organizations must go through the same process to develop treatments for ultra-rare conditions. To guide and accelerate the work for others, Ramesh has created OpenTreatments Foundation, a nonprofit with the with a software platform to enable treatments for genetic diseases regardless of rarity or geography. OpenTreatments provides people with a road map for developing genetic medicines; connects them with researchers, clinicians and other needed to advance their programs; and helps them show their capabilities to raise funding despite the rarity of a condition. We spoke to Ramesh, founder of OpenTreatments Foundation, about how his software platform works, the need it addresses, and how it can accelerate the development of treatments for ultra-rare genetic diseases.

  continue reading

484 에피소드

Artwork
icon공유
 
Manage episode 288390846 series 60790
RARECast에서 제공하는 콘텐츠입니다. 에피소드, 그래픽, 팟캐스트 설명을 포함한 모든 팟캐스트 콘텐츠는 RARECast 또는 해당 팟캐스트 플랫폼 파트너가 직접 업로드하고 제공합니다. 누군가가 귀하의 허락 없이 귀하의 저작물을 사용하고 있다고 생각되는 경우 여기에 설명된 절차를 따르실 수 있습니다 https://ko.player.fm/legal.

Sanath Kumar Ramesh’s son Raghav was born with an ultra-rare and progressive disorder known as SSMD. The condition is caused by mutations in the GPX4 gene. There are only a handful of known patients with GPX4 mutations. In the past, most known cases resulted in death about a month after birth. Ramesh has moved with remarkable speed to find patients, raise money, and drive research. But he also realized that many other parents of children and small, rare disease organizations must go through the same process to develop treatments for ultra-rare conditions. To guide and accelerate the work for others, Ramesh has created OpenTreatments Foundation, a nonprofit with the with a software platform to enable treatments for genetic diseases regardless of rarity or geography. OpenTreatments provides people with a road map for developing genetic medicines; connects them with researchers, clinicians and other needed to advance their programs; and helps them show their capabilities to raise funding despite the rarity of a condition. We spoke to Ramesh, founder of OpenTreatments Foundation, about how his software platform works, the need it addresses, and how it can accelerate the development of treatments for ultra-rare genetic diseases.

  continue reading

484 에피소드

모든 에피소드

×
 
Loading …

플레이어 FM에 오신것을 환영합니다!

플레이어 FM은 웹에서 고품질 팟캐스트를 검색하여 지금 바로 즐길 수 있도록 합니다. 최고의 팟캐스트 앱이며 Android, iPhone 및 웹에서도 작동합니다. 장치 간 구독 동기화를 위해 가입하세요.

 

빠른 참조 가이드