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rare diseases

  • ​​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
  • Rareatives Announces Supporting Partnership with the World Orphan Drug Congress USA 2026
    January 23, 2026

    Rareatives Announces Supporting Partnership with the World Orphan Drug Congress USA 2026

    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
  • Life’s a Polyp: Jenny’s Journey from FAP Patient to Advocate
    October 1, 2025

    Life’s a Polyp: Jenny’s Journey from FAP Patient to Advocate

    Jessica Lynn
  • Fighting for FCAS Awareness: How One Military Family Navigates Rare Disease Care and Stigma After Cross-Country Move
    September 9, 2025

    Fighting for FCAS Awareness: How One Military Family Navigates Rare Disease Care and Stigma After Cross-Country Move

    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
  • “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
  • Malani’s Mission: One Family’s Commitment to Raising BPAN Awareness
    March 6, 2025

    Malani’s Mission: One Family’s Commitment to Raising BPAN Awareness

    Jessica Lynn
  • Tisento Therapeutics’ Patient-Informed Phase 2 Trial is Advancing MELAS Research
    February 26, 2025

    Tisento Therapeutics’ Patient-Informed Phase 2 Trial is Advancing MELAS Research

    Jessica Lynn
  • A Mental Health Crisis is Looming for Rare Disease Caregivers. Give an Hour is Here to Help.
    January 29, 2025

    A Mental Health Crisis is Looming for Rare Disease Caregivers. Give an Hour is Here to Help.

    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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