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The Unmet Need in Rare Disease, feat. Dr. Emil Kakkis of Ultragenyx

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Manage episode 400084027 series 2655724
Content provided by Patient Worthy. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Patient Worthy or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://staging.podcastplayer.com/legal.

In this episode, we speak with Dr. Emil Kakkis, a physician and scientist who has spent more than 30 years helping to advance research, treatment and policy for rare disease patients. He is also the founder of both the EveryLife Foundation for Rare Diseases and Ultragenyx, a life sciences company dedicated to developing innovative treatments for rare and ultra-rare diseases. Topics discussed: advanced tech and the promise it holds, the key factors in advancing rare therapies, issues standing in the way of treatment access and more.

If you'd like to pick up a copy of Dr. Kakkis' book, you can find it at Impositivity Media or at Amazon.
You can learn more about Rare Disease Week here.

Editor’s Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have an aHUS journey to share or want to connect with others about chronic illness, reach out here to learn more about how your voice can help spread awareness and inspire individuals from all walks of life.

  continue reading

76 episodes

Artwork
iconShare
 
Manage episode 400084027 series 2655724
Content provided by Patient Worthy. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Patient Worthy or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://staging.podcastplayer.com/legal.

In this episode, we speak with Dr. Emil Kakkis, a physician and scientist who has spent more than 30 years helping to advance research, treatment and policy for rare disease patients. He is also the founder of both the EveryLife Foundation for Rare Diseases and Ultragenyx, a life sciences company dedicated to developing innovative treatments for rare and ultra-rare diseases. Topics discussed: advanced tech and the promise it holds, the key factors in advancing rare therapies, issues standing in the way of treatment access and more.

If you'd like to pick up a copy of Dr. Kakkis' book, you can find it at Impositivity Media or at Amazon.
You can learn more about Rare Disease Week here.

Editor’s Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have an aHUS journey to share or want to connect with others about chronic illness, reach out here to learn more about how your voice can help spread awareness and inspire individuals from all walks of life.

  continue reading

76 episodes

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