• Rare Candor: A Podcast for People Who Live With or Love Someone With A Rare Disease

  • Jun 7 2024
  • Length: 16 mins
  • Podcast

Rare Candor: A Podcast for People Who Live With or Love Someone With A Rare Disease  By  cover art

Rare Candor: A Podcast for People Who Live With or Love Someone With A Rare Disease

  • Summary

  • This episode kicks off 'Rare Candor,' a podcast diving into the raw and unfiltered experiences of living with rare or chronic diseases. Hosts Sarah Jones and Pam Squires share their personal battles, especially Sarah's fight with EGPA (Eosinophilic Granulomatosis with Polyangiitis), and expose the glaring lack of research, persistent medical gaslighting, and the constant struggle within a failing healthcare system. With a foundation of empathy, they aim to smash the loneliness of rare disease sufferers by sharing real stories, healthcare hacks, and policy discussions. Prepare to have candid and empowering conversations that bring a voice to the often overlooked and misunderstood rare disease community.

    Visit our website Eosinophilic & Rare Disease Cooperative to learn more and follow us on FaceBook and LinkedIn

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