Advocacy and Activism

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SC Warrior Death due to Hospital Negligence

Sickle Cell Warrior Death Inquest Reveals Gross Negligence in Hospital This makes me so mad.  Rest Pain-free Mr. Evan Smith, Your death will not be in vain, you will save many warriors, I promise. Shame on you North Middlesex Hospital. All their excuses don’t matter. This young man lost his life due to poor medical […]

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(un)Summit: A RARE Patient Advocacy

Global Genes LIVE! Get ready for an (un)Summit! Find a variety of engaging and educational online events, meet-ups, workshops and performances.  (un)Summit: September 15-25, 2020 A RARE Patient Advocacy (un)Summit. This two-week event will provide members of the rare disease community and allies with ways to connect and engage with each other through interactive activities

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