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Rarest of the Rare: Neena Nizar and the Jansen's Foundation

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Manage episode 271853189 series 2655724
内容由Patient Worthy提供。所有播客内容(包括剧集、图形和播客描述)均由 Patient Worthy 或其播客平台合作伙伴直接上传和提供。如果您认为有人在未经您许可的情况下使用您的受版权保护的作品,您可以按照此处概述的流程进行操作https://zh.player.fm/legal

In this episode, Ilana has a conversation with Jansen's Foundation president and founder Neena Nizar. Jansen's Disease is one one of the rarest disorders in the world, with Neena reporting only 10 known cases worldwide when she started her foundation in 2017. This interview was recorded in February 2020 at NIH Rare Disease Day. Since then, Neena reports that the COVID-19 pandemic has understandably slowed some of the Jansen's Foundation's work, but that they are moving things back on track soon.
Read about Neena and her family in the New York Times, here: https://www.nytimes.com/2020/07/07/health/rare-diseases.html

  continue reading

63集单集

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Manage episode 271853189 series 2655724
内容由Patient Worthy提供。所有播客内容(包括剧集、图形和播客描述)均由 Patient Worthy 或其播客平台合作伙伴直接上传和提供。如果您认为有人在未经您许可的情况下使用您的受版权保护的作品,您可以按照此处概述的流程进行操作https://zh.player.fm/legal

In this episode, Ilana has a conversation with Jansen's Foundation president and founder Neena Nizar. Jansen's Disease is one one of the rarest disorders in the world, with Neena reporting only 10 known cases worldwide when she started her foundation in 2017. This interview was recorded in February 2020 at NIH Rare Disease Day. Since then, Neena reports that the COVID-19 pandemic has understandably slowed some of the Jansen's Foundation's work, but that they are moving things back on track soon.
Read about Neena and her family in the New York Times, here: https://www.nytimes.com/2020/07/07/health/rare-diseases.html

  continue reading

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