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genetics

  • The Zebra & The Bear: How One Mother’s Tireless Efforts to Save Her Daughter from MSD Helped Advance Gene Therapy
    December 19, 2025

    The Zebra & The Bear: How One Mother’s Tireless Efforts to Save Her Daughter from MSD Helped Advance Gene Therapy

    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
  • 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
  • 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
  • When Doctors Stop Listening: The Challenges of Living with Multiple Rare Conditions
    December 2, 2024

    When Doctors Stop Listening: The Challenges of Living with Multiple Rare Conditions

    Jessica Lynn

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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