The Black Women's Health Imperative 2020 Impact Report

RARE DISEASE DIVERSITY COALITION (RDDC) The Black Women’s Health Imperative (BWHI) formed a coalition The Black Women’s Health Imperative (BWHI) formed a coalition focused on reducing racial disparities in the rare disease community. focused on reducing racial disparities in the rare disease community.

The Rare Disease Diversity Coalition’s work is led by BWHI and a The Rare Disease Diversity Coalition’s work is led by BWHI and a leadership steering committee comprised of advocacy, community and leadership steering committee comprised of advocacy, community and industry leaders with the following goals: industry leaders with the following goals: • Reduce racial disparities in the rare disease community • Reduce racial disparities in the rare disease community • Identify and advocate for evidence-based solutions to alleviate the • Identify and advocate for evidence-based solutions to alleviate the disproportionate burden of rare diseases on communities of color disproportionate burden of rare diseases on communities of color • Help achieve greater equality within the rare disease community • Help achieve greater equality within the rare disease community It is comprised of four working groups, which are 1) Research & Clinical It is comprised of four working groups, which are 1) Research & Clinical Trials; 2) Delays in Diagnosis & Treatment; 3) Patient and Provider Trials; 2) Delays in Diagnosis & Treatment; 3) Patient and Provider Engagement; and 4) Government Regulation, Legislation and Policy.

Engagement; and 4) Government Regulation, Legislation and Policy.

BWHI is expanding the coalition’s membership to enlist additional BWHI is expanding the coalition’s membership to enlist additional industry input and support to advance the goals of the coalition. industry input and support to advance the goals of the coalition.

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