Research & Resources

RDDCTM convenes rare disease experts, patient organizations, health and diversity advocates, and industry leaders with a deep knowledge of the medical, industry, regulatory, and cultural challenges facing people of color with rare diseases.

Research Resources

A Report of Survey Findings: Diversity, Equity, and Inclusion Efforts in Rare Disease Organizations

Data from the survey and key informant interviews indicated a lack of knowledge of how to incorporate DEI concepts effectively and efficiently throughout an organization’s framework due to a variety of organization specific needs. Moreover, respondents identified DEI as an add-on to programs rather than intrinsic to the fabric of their organization. Therefore, we identified the following key findings and high-level recommendations.


Rare Disease Day 2023 Toolkit

The Rare Disease Diversity CoalitionTM (RDDCTM) advocates for solutions to address the inequities that diverse and vulnerable communities face with respect to rare disease. On February 28th, Rare Disease Day, we join the globally-coordinated movement on rare diseases, to work towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. The key message for Rare Disease Day 2023 is #RiseForRare in support of RDDCTM and #ShareYourColours in honor of the global movement.

The purpose of the Rare Disease Day Toolkit is to provide members with educational and engagement tools and resources which can be shared across owned platforms and networks.

Rare Disease Diversity CoalitionTM Action Plan

The Rare Disease Diversity CoalitionTM (RDDCTM) formed under the leadership of the Black Women’s Health Imperative (BWHI) to help address the extraordinary challenges faced by rare disease patients of color. As advocates for patients who deal with dual struggles—to be included in the promise of scientific advancements that improve health outcomes and not be left behind because of their rare condition or their race—the leaders of RDDCTM envision a unique opportunity to contribute to progress for both the rare disease and health disparities movements. This paper will describe the journey that RDDCTM is taking to contribute to real and significant progress.


RDDC & GeneClips: Research, Clinical Trials, & Genetic Testing Educational Video Series


What is the difference between Clinical Genetic Testing and Research Genetic Testing?


Informed Consent

GeneClips2022_IRB_Mitchell [v5]

Institutional Review Board and Your Protection

Achievement Reports