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Driving Genetic ALS and FTD Activism with Daniel Barvin End the Legacy Foundation

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Daniel Barvin, Founder of the End the Legacy Foundation, is also the VP of Operations and Patient Advocacy at Coya Therapeutics. Coming from a family with a genetic predisposition to develop ALS, Daniel has brought together a community of activists who are intent on educating doctors and patients about early diagnosis and testing. This organization is also raising awareness about the need for more research and funding to cure genetic ALS and FTD.

Coya Therapeutics is developing diagnostics and treatments for genetic ALS and FTD, and Daniel is bringing the voices of the patients and family members to the table.

We talk about:

  • Why there is a need for another ALS organization
  • How the End the Legacy Foundation is using social media to build awareness and supporters
  • The Genetic ALS and FTD Community Summit
  • Building partnerships with researchers, industry and government
  • Implications for families with inherited diseases

#EndtheLegacy #ALS #GeneticALS #ALSandFTD #GeneticDiseases #RareDiseases #Activism #InheritedDiseases

EndtheLegacy.org

CoyaTherapeutics.com

Interview on EmpoweredPatientPodcast

Transcript of Coya Therapeutics interview

  continue reading

108 episódios

Artwork
iconCompartilhar
 
Manage episode 419469348 series 1171999
Conteúdo fornecido por RadioActive. Todo o conteúdo do podcast, incluindo episódios, gráficos e descrições de podcast, é carregado e fornecido diretamente por RadioActive ou por seu parceiro de plataforma de podcast. Se você acredita que alguém está usando seu trabalho protegido por direitos autorais sem sua permissão, siga o processo descrito aqui https://pt.player.fm/legal.

Daniel Barvin, Founder of the End the Legacy Foundation, is also the VP of Operations and Patient Advocacy at Coya Therapeutics. Coming from a family with a genetic predisposition to develop ALS, Daniel has brought together a community of activists who are intent on educating doctors and patients about early diagnosis and testing. This organization is also raising awareness about the need for more research and funding to cure genetic ALS and FTD.

Coya Therapeutics is developing diagnostics and treatments for genetic ALS and FTD, and Daniel is bringing the voices of the patients and family members to the table.

We talk about:

  • Why there is a need for another ALS organization
  • How the End the Legacy Foundation is using social media to build awareness and supporters
  • The Genetic ALS and FTD Community Summit
  • Building partnerships with researchers, industry and government
  • Implications for families with inherited diseases

#EndtheLegacy #ALS #GeneticALS #ALSandFTD #GeneticDiseases #RareDiseases #Activism #InheritedDiseases

EndtheLegacy.org

CoyaTherapeutics.com

Interview on EmpoweredPatientPodcast

Transcript of Coya Therapeutics interview

  continue reading

108 episódios

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