Lolita Smith-Moore
Group lead
Linda Goler Blount (BWHI)
Co-chair
Dr. Marshall Summar (Uncommon Cures, LLC & Children's National Hospital)
Co-chair
Veronica Moore (Horizon Therapeutics)
Advisor
Kathy Machuzak (Travere Therapeutics)
Advisor
RDDCTM works to eliminate health disparities for diverse rare disease patients. We do this by developing and deploying an evidence-based suite of advocacy tools and research interventions that will provide tangible solutions for rare diseases. Through these efforts, we strive to improve the lives and health outcomes of diverse rare disease patients around the world.
The Diversity in Research & Clinical Trials working group aims to address pipeline and systemic issues that inhibit low-income people and communities of color from participating in research and clinical trials.
Achievements:
Group lead
Co-chair
Co-chair
Advisor
Advisor
The Provider Education & Engagement working group aims to achieve equity in the rare disease space through education of medical professionals in the areas of rare diseases impact on communities of color, recognizing rare disease symptoms, and treating patients with rare disease with dignity and respect.
Achievements:
Group lead
Chair
Advisor
The Patient & Caregiver working group aims to assess and overcome barriers that diverse patients and their caregivers disproportionately face in coverage, access, affordability, timely treatment for rare disease, their underrepresentation within the rare disease community, as well as to inform and empower patients and caregivers to receive the best care possible.
Achievements:
Group lead
Co-chair
Co-chair
The Delays in Diagnosis working group aims to build awareness and trust and address the disproportionate barriers to rare disease diagnosis that diverse patient populations often face, which can delay treatment and access to care, and negatively impact health outcomes.
Achievements:
Group lead
Co-chair
The Government Regulation, Legislation & Policy working group aims to advance and protect the mission of the RDDCTM in the evolving public policy landscape with our allies and partners. This includes improving awareness and understanding of rare disease and diversity issues, especially as they relate to rare disease patients of color.
Achievements:
Group lead
Advisor
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