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patient stories

  • Never Knowing When: Life With Cerebral Cavernous Malformation, and the Patient-Driven Search for a Cure 
    October 14, 2026

    Never Knowing When: Life With Cerebral Cavernous Malformation, and the Patient-Driven Search for a Cure 

    Davi Jacobs
  • This Mother Has Fought for Three Years to Find Answers for Her Undiagnosed Son – Can You Help?
    September 8, 2026

    This Mother Has Fought for Three Years to Find Answers for Her Undiagnosed Son – Can You Help?

    Jessica Lynn
  • “Not Defined By His Disability:” What Bennett Has Taught His Family About Spinal Muscular Atrophy
    April 7, 2026

    “Not Defined By His Disability:” What Bennett Has Taught His Family About Spinal Muscular Atrophy

    Jessica Lynn
  • My Immune System Attacks My Liver — and Nobody Knows Why: Katherine’s Autoimmune Hepatitis Story
    March 20, 2026

    My Immune System Attacks My Liver — and Nobody Knows Why: Katherine’s Autoimmune Hepatitis Story

    Jessica Lynn
  • This Mother-Son Duo Helped Change the Treatment Landscape for Classic Congenital Adrenal Hyperplasia
    February 13, 2026

    This Mother-Son Duo Helped Change the Treatment Landscape for Classic Congenital Adrenal Hyperplasia

    Jessica Lynn
  • My Laryngeal Cancer Journey – Ginger Ortiz
    February 10, 2026

    My Laryngeal Cancer Journey – Ginger Ortiz

    Jessica Lynn
  • ​​Always Forge Ahead with a Purpose: Navy Veteran Dan “Dry Dock” Shockley Turns a Rare Disease Diagnosis into a Mission to Educate Others
    February 3, 2026

    ​​Always Forge Ahead with a Purpose: Navy Veteran Dan “Dry Dock” Shockley Turns a Rare Disease Diagnosis into a Mission to Educate Others

    Jessica Lynn
  • 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
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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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