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Rareatives

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patient stories

  • CureMFM13: How a Rare Disease Diagnosis Built a Community
    November 20, 2025

    CureMFM13: How a Rare Disease Diagnosis Built a Community

    Jessica Lynn
  • It Took Ten Years to Receive Her Daughter’s MSMDS Diagnosis: Here’s Why This Mom is Speaking Up
    November 14, 2025

    It Took Ten Years to Receive Her Daughter’s MSMDS Diagnosis: Here’s Why This Mom is Speaking Up

    Jessica Lynn
  • Fighting for Their Daughters: Two Mothers Stand Against the FDA After Complete Response Letter for Rare Disease Treatment
    November 3, 2025

    Fighting for Their Daughters: Two Mothers Stand Against the FDA After Complete Response Letter for Rare Disease Treatment

    Jessica Lynn
  • After Two Decades, Information on Thygeson’s Disease Remains Slim: Here’s Why Emma is Sharing Her Story
    October 28, 2025

    After Two Decades, Information on Thygeson’s Disease Remains Slim: Here’s Why Emma is Sharing Her Story

    Jessica Lynn
  • Fighting for Her Voice: A Rare Disease Patient Looks to the Future
    October 6, 2025

    Fighting for Her Voice: A Rare Disease Patient Looks to the Future

    Jessica Lynn
  • 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
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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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