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.

RDDC What We Do

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

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

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