How One Patient Organization Leverages Research Investments RARECast podcast

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Health Industry Business Health Care Rare Disease RARECast Health and Well-Being

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How One Patient Organization Leverages Research Investments

6M ago 29:05

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Indhold leveret af RARECast. Alt podcastindhold inklusive episoder, grafik og podcastbeskrivelser uploades og leveres direkte af RARECast eller deres podcastplatformspartner. Hvis du mener, at nogen bruger dit ophavsretligt beskyttede værk uden din tilladelse, kan du følge processen beskrevet her https://da.player.fm/legal.

Tuberous sclerosis complex is a genetic disorder that is characterized by tumor growth in various organs in the body, as well as neurological effects. Most people with TSC experience epilepsy early in life and many develop autism or other neuropsychiatric issues. The TSC Alliance has invested more than $37 million in research since 1984. Its efforts and collaborations have resulted in six U.S. Food and Drug Administration approved treatments for some aspects of the disease or related conditions. We spoke to Steve Roberds, chief scientific officer of the TSC Alliance, about the organization's success with crafting a research agenda, how it’s been able to invest in ways that catalyze research, and what it’s done to facilitate drug development by industry.

… continue reading

519 episoder

#Health Industry #Business #Health Care #Rare Disease #RARECast #Health and Well-Being

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How One Patient Organization Leverages Research Investments

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published 6M ago

Del

MP3•Episode hjem

Indhold leveret af RARECast. Alt podcastindhold inklusive episoder, grafik og podcastbeskrivelser uploades og leveres direkte af RARECast eller deres podcastplatformspartner. Hvis du mener, at nogen bruger dit ophavsretligt beskyttede værk uden din tilladelse, kan du følge processen beskrevet her https://da.player.fm/legal.

Tuberous sclerosis complex is a genetic disorder that is characterized by tumor growth in various organs in the body, as well as neurological effects. Most people with TSC experience epilepsy early in life and many develop autism or other neuropsychiatric issues. The TSC Alliance has invested more than $37 million in research since 1984. Its efforts and collaborations have resulted in six U.S. Food and Drug Administration approved treatments for some aspects of the disease or related conditions. We spoke to Steve Roberds, chief scientific officer of the TSC Alliance, about the organization's success with crafting a research agenda, how it’s been able to invest in ways that catalyze research, and what it’s done to facilitate drug development by industry.

… continue reading

519 episoder

#Health Industry #Business #Health Care #Rare Disease #RARECast #Health and Well-Being

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