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Rare Disease Diversity Coalition Formed To End Racial Disparities In Rare Disease Diagnosis, Research And Treatment

Rare Disease Diversity Coalition Formed To End Racial Disparities In Rare Disease Diagnosis, Research And Treatment

NBA Champion Alonzo Mourning, White House COVID Health Equity Task Force Chair Dr. Marcella Nunez-Smith, Rep. G. K. Butterfield and Leading Rare Disease Experts to Join RDDC on February 23rd for Launch of Diversity Coalition

PR Newswire

WASHINGTON, Feb. 23, 2021 /PRNewswire/ -- Today, the Black Women's Health Imperative (BWHI) hosts the first public meeting of the Rare Disease Diversity Coalition (RDDC). RDDC seeks to address the pressing challenges faced by marginalized populations and identify potential solutions. Led by BWHI and comprised of a diverse group of healthcare organizations, patient advocacy groups, and industry experts, the RDDC is poised to achieve action in the years to come by:

  • Reducing racial disparities in the rare disease community;
  • Identifying and advocating for evidence-based solutions to alleviate the disproportionate burden of rare diseases on communities of color; and
  • Helping to achieve greater equality within the rare disease community

BWHI Rare Disease Diversity Coalition Formed To End Racial Disparities and Health Inequities in Rare Disease, Diagnosis, Research and Treatment in Communities of Color.         

Rare Disease Diversity Coalition

Black Women's Health Imperative (PRNewsfoto/Black Women’s Health Imperative)

"RDDC has a huge mandate, with COVID our work could not be more important" -Linda Goler Blount, BWHI President & CEO

The RDDC was established at a pivotal time, as the United States continues to grapple with the impact of the COVID-19 pandemic, and the glaringly evident racial disparities that exist regarding infection rates, treatment and access to care.

The coalition's initial public meeting, will commemorate the upcoming international Rare Disease Day, and will tap into the collective expertise and experiences of various stakeholders to raise awareness of the work. The meeting will take place virtually today, February 23, 2021, from 1:00 P.M.-3:00 P.M. EST. Moderated by Emmy Award-Winning anchor Lesli Foster, the meeting will feature participation by leading rare disease experts from top healthcare organizations including the American Medical Association, National Medical Association, the National Hispanic Medical Association, and the Asian & Pacific Islander American Health Forum. Remarks will also be offered by Congressman G. K. Butterfield (D-NC), Dr. Marcella Nunez-Smith, Chair of the White House Covid-19 Health Equity Task Force, and NBA champion Alonzo Mourning, who suffered from focal segmental glomerulosclerosis, a rare kidney disorder, and had a double kidney transplant in 2003.

RDDC has just released its 2021 Action Plan entitled "Charting the Path Forward for Equity in Rare Diseases", that lays out priorities which the coalition will be undertaking to address the challenges that rare disease patients of color face. At, RDDC now has a website to share resources, promote patient stories, provide updates on their work, and otherwise engage with the rare disease community.

"RDDC has a huge mandate, but our work could not be more important. As COVID-19 sets its sights on people of color and patients living with rare and chronic diseases, the individuals who exist at the intersection of these two realities need dedicated advocacy and policy change now more than ever," said Linda Goler Blount, BWHI President and CEO. 

"Racial bias is entrenched in our healthcare system and deeply lowers the quality of care for patients of color. RDDC is working to educate, support and empower rare disease patients of color and their caregivers so they can be their own advocates," said Dr. Elena Rios, President & CEO of the National Hispanic Medical Association.

"The work of RDDC is critical in order to address the health inequities that people of color with rare disease experience. RDDC is focused on raising awareness around these health inequalities, reducing racial disparities and advocating for evidence-based solutions," said Juliet K. Choi, Chief Executive Officer of Asian & Pacific Islander American Health Forum.

RDDC Steering Committee Member



Linda Goler Blount, MPH

Black Women's Health Imperative

President & CEO

Lauren Lee, MA


Executive Vice President, Stakeholder Engagement

Marshall Summar, MD

Children's National Hospital

Chief, Division of Genetics and Metabolism; Director, Rare Disease Institute; Board Chair of NORD

Juliet K. Choi, JD

Asian & Pacific Islander American Health Forum (APIAHF)

Chief Executive Officer

Elena Rios, MD

National Hispanic Medical Association


Christian Rubio

Global Genes

Vice-President, Strategic Advancement

Brian Thompson, MD

Association of American Indian Physicians

Board of Directors Member

Aletha Maybank, MD, MPH

American Medical Association

Chief Health Equity Officer And Vice President

Garfield Clunie, MD

National Medical Association

Board of Trustees and Treasurer

Beverley Francis-Gibson, MA

Sickle Cell Disease Association of America


Yousra Yusuf, MPH

South Asian Public Health Association


Eric Dube, PhD

Travere Therapeutics


Amy Hinojosa

MANA National

President and CEO

Eve Dryer

Travere Therapeutics

Executive Director, Patient Advocacy

Shonta Chambers, MSW

Patient Advocate Foundation

Principal Investigator, SelfMade Health Network

Kimberly Haugstad, MBA

ACTion Partners


Tamar Thompson, MS

Alexion Pharmaceuticals, Inc.

Vice President US Government Affairs & Policy

Rev. Anthony J. Brownlow, M.Div., MBA

Alfred Street Baptist Church

Deputy Chief Operating Officer

Cassandra McCullough, MBA

Association of Black Cardiologists

President & CEO

Pamela Price, RN

Balm In Gilead

Deputy Director

Ashley John, MS

Biotechnology Innovation Organization

Director, Patient Advocacy and Alliances

Tammy Boyd, MPH, JD

Black Women's Health Imperative

Chief Policy Officer & Counsel

John Burns

Burns Brothers

Managing Partner

Kim Smith-Whitley, MD

Children's Hospital of Philadelphia

Clinical Director of Hematology and Director of the Comprehensive Sickle Cell Center

Laura Weidner, JD

Epilepsy Foundation of America

VP of Government Affairs and Advocacy

Julia Jenkins, MA

EveryLife Foundation

Executive Director

Donna Cryer, JD

Global Liver Institute


Rev. Matthew L. Watley, M.Div.

Kingdom Fellowship AME Church

Senior Pastor

C. Grace Whiting, JD

National Alliance for Caregiving

President and CEO

Millicent Gorham, MBA

National Black Nurses Association

Executive Director

Lauren Lee, MA


Executive Vice President, Stakeholder Engagement

Debbie Drell


Director of Membership Services

Saira Sultan, JD

PCORI Advisory Panel on  Rare Disease


Courtney Pieczynski Keplinger, MBA

Vertex Pharmaceuticals

Senior Director, Public Policy and Alliance Development (Pipeline)

About the Black Women's Health Imperative

The Black Women's Health Imperative is a national non-profit organization dedicated to advancing health equity and social justice for Black women across generations, through policy, advocacy, education, research, and leadership development. The organization identifies the most pressing health issues that affect the nation's 22 million Black women and girls and invests in the best of the best strategies that will accomplish its goals. For more information, please visit 

Media Contact: Priscilla Clarke, Clarke PR, (202)723-2200, 

To View The RDDC Meeting visit BWHI YouTube:

RDDC Website:

BWHI Social Media

Hashtag: #RiseForRare


Instagram:  (@blkwomenshealth)





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SOURCE BWHI Rare Disease Diversity Coalition

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