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patient stories

  • 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
  • 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
  • A Swimmer’s Journey with CAH — and A New Treatment Option That Changes Everything
    May 1, 2025

    A Swimmer’s Journey with CAH — and A New Treatment Option That Changes Everything

    Jessica Lynn
  • The Voice She Couldn’t Find: A Speech Pathologist’s Journey Facing a Rare Variant of Guillain-Barré Syndrome
    April 9, 2025

    The Voice She Couldn’t Find: A Speech Pathologist’s Journey Facing a Rare Variant of Guillain-Barré Syndrome

    Jessica Lynn
  • His Fight with Hemophilia Has Taught This Football Coach to Live a Life Without Limits
    March 20, 2025

    His Fight with Hemophilia Has Taught This Football Coach to Live a Life Without Limits

    Jessica Lynn
  • The Educational Burden of Rare Disease: Angela Faces Challenges in Having to Teach Providers About Stiff Person Syndrome
    March 14, 2025

    The Educational Burden of Rare Disease: Angela Faces Challenges in Having to Teach Providers About Stiff Person Syndrome

    Jessica Lynn
  • Malani’s Mission: One Family’s Commitment to Raising BPAN Awareness
    March 6, 2025

    Malani’s Mission: One Family’s Commitment to Raising BPAN Awareness

    Jessica Lynn
  • Fighting for the Next Generation: A Young Advocate’s Vision for Disability Rights
    January 16, 2025

    Fighting for the Next Generation: A Young Advocate’s Vision for Disability Rights

    Jessica Lynn
  • Rare Twice Over: A Mother and Son’s Journey in HADDS and AUTS2
    January 2, 2025

    Rare Twice Over: A Mother and Son’s Journey in HADDS and AUTS2

    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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