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Rare Candor

By: Pam Squires & Sarah Jones
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  • Summary

  • Welcome to Rare Candor, a podcast for people who live with and love someone with a rare disease. We'll talk about medications, accessing care, navigating everyday lift, policy and insurance issues, and more. Living with a rare disease can be an exhausting, annihilating, scary, lonely, unpredictable and invisible - for the people with their disease and those that love them. We promise not to make you depressed, peppered in humor is guaranteed, albeit likely dark humor - but we trust you will appreciate the rare candor.
    Pam Squires & Sarah Jones
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Episodes
  • Rare Candor: A Podcast for People Who Live With or Love Someone With A Rare Disease

    Rare Candor: A Podcast for People Who Live With or Love Someone With A Rare Disease
    Jun 7 2024

    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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    16 mins
Hygiene & Healthy Living
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