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  • Life’s a Polyp: Jenny’s Journey from FAP Patient to Advocate
    October 1, 2025

    Life’s a Polyp: Jenny’s Journey from FAP Patient to Advocate

    Jessica Lynn
  • Decoding Darier’s: How a Teacher Created a Network for Darier’s Disease
    September 11, 2025

    Decoding Darier’s: How a Teacher Created a Network for Darier’s Disease

    Jessica Lynn
  • Fighting for FCAS Awareness: How One Military Family Navigates Rare Disease Care and Stigma After Cross-Country Move
    September 9, 2025

    Fighting for FCAS Awareness: How One Military Family Navigates Rare Disease Care and Stigma After Cross-Country Move

    Jessica Lynn
  • Golin Health’s “Raising Rare Report” Bridges the Communication Gap Between Young Adults and Their Caregivers
    August 18, 2025

    Golin Health’s “Raising Rare Report” Bridges the Communication Gap Between Young Adults and Their Caregivers

    Jessica Lynn
  • The New Reality of Rare Disease Treatment: How an FDA-Approved Medicine for NPC Helped Change Connor’s Life
    August 6, 2025

    The New Reality of Rare Disease Treatment: How an FDA-Approved Medicine for NPC Helped Change Connor’s Life

    Jessica Lynn
  • How One Family is Navigating Life with XLID98, A Genetic Condition with Only 298 Known Cases
    June 28, 2025

    How One Family is Navigating Life with XLID98, A Genetic Condition with Only 298 Known Cases

    Jessica Lynn
  • Heart of PPA2: Kathleen is Raising PPA2 Awareness to Support Her Son Noah
    June 16, 2025

    Heart of PPA2: Kathleen is Raising PPA2 Awareness to Support Her Son Noah

    Jessica Lynn
  • Don’t Punish Pain: A Rare Disease Warrior’s Fight for Pain Management and Policy Change
    June 10, 2025

    Don’t Punish Pain: A Rare Disease Warrior’s Fight for Pain Management and Policy Change

    Jessica Lynn
  • An SOS for SPS
    May 22, 2025

    An SOS for SPS

    Jessica Lynn
  • How AI is Helping Detect Rare Eye Diseases
    May 15, 2025

    How AI is Helping Detect Rare Eye Diseases

    Jessica Lynn
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Rareatives is a patient-led publication where the unique stories of the rare disease community become headline news. We’re flipping the script on rare diseases. Not just awareness — action. Your story could spark the next big change. Ready to rewrite the narrative?

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