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  • 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
  • “Exactly Who She’s Meant to Be”: One Mom is Flipping the Script on How People Think About Prader-Willi Syndrome
    March 24, 2025

    “Exactly Who She’s Meant to Be”: One Mom is Flipping the Script on How People Think About Prader-Willi 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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