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genetic disorder

  • 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
  • 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
  • “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
  • PDUFA Date Extended for Potential Barth Syndrome Therapy Elamipretide
    January 27, 2025

    PDUFA Date Extended for Potential Barth Syndrome Therapy Elamipretide

    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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