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Contenido proporcionado por Joe Woolworth and National MPS Society. Todo el contenido del podcast, incluidos episodios, gráficos y descripciones de podcast, lo carga y proporciona directamente Joe Woolworth and National MPS Society o su socio de plataforma de podcast. Si cree que alguien está utilizando su trabajo protegido por derechos de autor sin su permiso, puede seguir el proceso descrito aquí https://es.player.fm/legal.
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This Mess Called MPS

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Manage episode 321472231 series 3320145
Contenido proporcionado por Joe Woolworth and National MPS Society. Todo el contenido del podcast, incluidos episodios, gráficos y descripciones de podcast, lo carga y proporciona directamente Joe Woolworth and National MPS Society o su socio de plataforma de podcast. Si cree que alguien está utilizando su trabajo protegido por derechos de autor sin su permiso, puede seguir el proceso descrito aquí https://es.player.fm/legal.

On this episode:

  • In this special Bonus Episode, we wanted to introduce the dedicated individuals that will be hosting the official podcast of the National MPS Society: Our Voices.
  • Terri Klein, Maureen Cote, Stephanie Cozine, and Jason Madison are here to talk about "This Mess Called MPS."
  • Terri introduces the National MPS Society and explains what causes MPS and ML.
  • These rare diseases collectively impact about 1 in 25,000 live births.
  • Maureen shares her story of how her extended family members received an MPS VI diagnosis and when she knew she wanted to be a part of the National MPS Society's Board of Directors.
  • Jason shares his story of being diagnosed as a child and living with MPS II as an adult.
  • Stephanie shares how her son was diagnosed with MPS I and how she came to find an inspiring community in the National MPS Society.
  • We discuss the hope that lives in this community and the vision we have for the podcast, Our Voices.

Mentioned on this episode:


The National MPS Society exists to cure, support, and advocate for MPS and ML.

If you like Our Voices, visit our website and follow us on social media on Facebook, Instagram, Twitter, and LinkedIn. And if you really like the podcast we'd appreciate you telling a friend (maybe even two).

  continue reading

17 episodios

Artwork
iconCompartir
 
Manage episode 321472231 series 3320145
Contenido proporcionado por Joe Woolworth and National MPS Society. Todo el contenido del podcast, incluidos episodios, gráficos y descripciones de podcast, lo carga y proporciona directamente Joe Woolworth and National MPS Society o su socio de plataforma de podcast. Si cree que alguien está utilizando su trabajo protegido por derechos de autor sin su permiso, puede seguir el proceso descrito aquí https://es.player.fm/legal.

On this episode:

  • In this special Bonus Episode, we wanted to introduce the dedicated individuals that will be hosting the official podcast of the National MPS Society: Our Voices.
  • Terri Klein, Maureen Cote, Stephanie Cozine, and Jason Madison are here to talk about "This Mess Called MPS."
  • Terri introduces the National MPS Society and explains what causes MPS and ML.
  • These rare diseases collectively impact about 1 in 25,000 live births.
  • Maureen shares her story of how her extended family members received an MPS VI diagnosis and when she knew she wanted to be a part of the National MPS Society's Board of Directors.
  • Jason shares his story of being diagnosed as a child and living with MPS II as an adult.
  • Stephanie shares how her son was diagnosed with MPS I and how she came to find an inspiring community in the National MPS Society.
  • We discuss the hope that lives in this community and the vision we have for the podcast, Our Voices.

Mentioned on this episode:


The National MPS Society exists to cure, support, and advocate for MPS and ML.

If you like Our Voices, visit our website and follow us on social media on Facebook, Instagram, Twitter, and LinkedIn. And if you really like the podcast we'd appreciate you telling a friend (maybe even two).

  continue reading

17 episodios

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