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  • 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
  • One Mom’s Fight to Change the Language Around Microvillus Inclusion Disease (MVID)
    September 27, 2026

    One Mom’s Fight to Change the Language Around Microvillus Inclusion Disease (MVID)

    Jessica Lynn
  • This Beautiful Liphe: How Marjorie and Ronan are Raising PKU Awareness
    September 23, 2026

    This Beautiful Liphe: How Marjorie and Ronan are Raising PKU Awareness

    Jessica Lynn
  • 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
  • CAMP4 Therapeutics’ CMO Yuri Maricich Describes Push to Deliver the First SYNGAP1 Treatment
    August 24, 2026

    CAMP4 Therapeutics’ CMO Yuri Maricich Describes Push to Deliver the First SYNGAP1 Treatment

    Jessica Lynn
  • Multiple Conditions and a Mission to Stop the Stigma: Sammy’s Story
    April 7, 2026

    Multiple Conditions and a Mission to Stop the Stigma: Sammy’s Story

    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
  • “Spinal Muscular Atrophy Is Not Our Whole Story”: How One Family Navigated Two SMA Diagnoses and Found Hope
    March 18, 2026

    “Spinal Muscular Atrophy Is Not Our Whole Story”: How One Family Navigated Two SMA Diagnoses and Found Hope

    Jessica Lynn
  • What It’s Like to Raise a Daughter with Maple Syrup Urine Disease in the Philippines
    February 26, 2026

    What It’s Like to Raise a Daughter with Maple Syrup Urine Disease in the Philippines

    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
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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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