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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
  • RDDCTM & GeneClips Research, Clinical Trials, & Genetic Testing Educational Video Series

Diversity in Research & Clinical Trials Leadership

Jocelyn Cooper

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

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 diseases from historically marginalized populations.

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
(Holland & Knight)

Group lead

Daron Watts
(Watts Group LLC)

Advisor

Patient, Provider, Caregiver (PPC) Journey

The Patient, Provider, and Caregiver Journey aims to advance implementation of equity centered strategies to improve the rare disease journey faced by diverse and underserved populations through empowering patients and caregivers, providing education to medical professionals, accelerating diagnosis, and ensuring timely access to treatment and clinical trials, thereby enhancing the overall health outcomes for patients.

Patient, Provider, Caregiver (PPC) Journey Leadership

Jocelyn Cooper

Group Lead

Stephanie Marshall
(The Assistance Fund)

Co-Chair

Shruti Mitkus
(Global Genes)

Co-Chair

Dr. Sana Syed

Co-Chair

Deanna Darlington
(Consultant, Business Development)

Co-Advisor

Sika Dunyoh
(Travere Therapeutics)

Co-Advisor

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