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Ep 155 Stiff Person Syndrome: A rare disease in the spotlight

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Manage episode 446306102 series 2359894
Content provided by iHeartPodcasts and Exactly Right. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by iHeartPodcasts and Exactly Right 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.

Stiff person syndrome, like many rare diseases, does not get nearly the same amount of screen time or name recognition that other, more common diseases do. For many people, Celine Dion’s announcement of her diagnosis with the condition in 2022 marked the first time they had heard of it. This limited awareness surrounding stiff person syndrome marks just one of the many challenges keeping this disease and other rare disorders in the dark. In this episode, we attempt to shed some light on stiff person syndrome, exploring the complex biology, frustrating history, and hopeful future of this disease. Because while the field of stiff person syndrome research faces many hurdles, there are also so many individuals - researchers, patients, advocates - and organizations that fight to bring this and other rare disorders into the light. Tune in today!

Links:

National Organization for Rare Diseases

Genetic and Rare Diseases Information Center

Johns Hopkins Stiff Person Syndrome Center

Support this podcast by shopping our latest sponsor deals and promotions at this link: https://bit.ly/3WwtIAu

See omnystudio.com/listener for privacy information.

  continue reading

242 episodes

Artwork
iconShare
 
Manage episode 446306102 series 2359894
Content provided by iHeartPodcasts and Exactly Right. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by iHeartPodcasts and Exactly Right 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.

Stiff person syndrome, like many rare diseases, does not get nearly the same amount of screen time or name recognition that other, more common diseases do. For many people, Celine Dion’s announcement of her diagnosis with the condition in 2022 marked the first time they had heard of it. This limited awareness surrounding stiff person syndrome marks just one of the many challenges keeping this disease and other rare disorders in the dark. In this episode, we attempt to shed some light on stiff person syndrome, exploring the complex biology, frustrating history, and hopeful future of this disease. Because while the field of stiff person syndrome research faces many hurdles, there are also so many individuals - researchers, patients, advocates - and organizations that fight to bring this and other rare disorders into the light. Tune in today!

Links:

National Organization for Rare Diseases

Genetic and Rare Diseases Information Center

Johns Hopkins Stiff Person Syndrome Center

Support this podcast by shopping our latest sponsor deals and promotions at this link: https://bit.ly/3WwtIAu

See omnystudio.com/listener for privacy information.

  continue reading

242 episodes

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