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  • Golin Health’s “Raising Rare Report” Bridges the Communication Gap Between Young Adults and Their Caregivers
    August 18, 2025

    Golin Health’s “Raising Rare Report” Bridges the Communication Gap Between Young Adults and Their Caregivers

    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
  • Heart of PPA2: Kathleen is Raising PPA2 Awareness to Support Her Son Noah
    June 16, 2025

    Heart of PPA2: Kathleen is Raising PPA2 Awareness to Support Her Son Noah

    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
  • How AI is Helping Detect Rare Eye Diseases
    May 15, 2025

    How AI is Helping Detect Rare Eye Diseases

    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
  • “Think Rare and Act Fast”: A South Dakota Family’s Mission After Losing Their Son Pruitt to OTC Deficiency
    April 28, 2025

    “Think Rare and Act Fast”: A South Dakota Family’s Mission After Losing Their Son Pruitt to OTC Deficiency

    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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