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
What We Do
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.
Diversity in Research & Clinical Trials Working Group
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:
- Know Your Options: Careers in Clinical Trial Research webinar
- RDDC & GeneClips Research, Clinical Trials, & Genetic Testing Educational Video Series
Diversity in Research & Clinical Trials Leadership
Provider Education & Engagement Working Group
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:
- Three webinars on identifying health inequities in the rare disease space, in partnership with NORD
- The inaugural Rare Disease Fellowship program
Provider Education & Engagement Leadership
Lolita Smith-Moore
Group lead
Dr. Latonya Washington (Bluff City Medical Society)
Chair
Sika Dunyoh (Travere Therapeutics)
Advisor
Patient & Caregiver Working Group
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:
- Organizational Capacity Survey
Patient & Caregiver Leadership
Micah Burbanks-Ivey
Group lead
Shonta Chambers (National Patient Advocate Foundation)
Co-chair
Stephanie Marshall (The Assistance Fund)
Co-chair
Delays in Diagnosis Working Group
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:
- Know Your Family History campaign
- Identifying free/low-cost genetic testing options for patients.
Delays in Diagnosis Leadership
Micah Burbanks-Ivey
Group lead
Shruti Mitkus (Global Genes)
Co-chair
Government Regulation, Legislation & Policy Working Group
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:
- FDA User Fee legislation-formal comment on the Senate FDA Safety and Landmark Advancements Act
- RDDCTM is recognized in congressional record for the work, overall mission, membership, and initiatives.
Government Regulation, Legislation & Policy Leadership
Micah Burbanks-Ivey
Group lead
Daron Watts (Watts Group LLC)
Advisor
