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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Survey: Draft Fact Sheets on SCD Therapies

The Sickle Cell Disease Coalition (SCDC), is developing fact sheets on sickle cell disease (SCD) therapies for the community and would appreciate your help reviewing the draft resources.  As background, the SCDC formed to amplify the voice of the SCD stakeholder community to improve outcomes for individuals with SCD and Sickle Cell Warriors, Inc. is a

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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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