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patient advocacy

  • ​​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
  • Decoding Darier’s: How a Teacher Created a Network for Darier’s Disease
    September 11, 2025

    Decoding Darier’s: How a Teacher Created a Network for Darier’s Disease

    Jessica Lynn
  • 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
  • Fighting for the Next Generation: A Young Advocate’s Vision for Disability Rights
    January 16, 2025

    Fighting for the Next Generation: A Young Advocate’s Vision for Disability Rights

    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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