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

in Kidney Transplant
Rare Disease Diversity Coalition Formed To End Racial Disparities In Rare Disease Diagnosis, Research And Treatment
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By writer to www.prnewswire.com

WASHINGTON, Feb. 23, 2021 /PRNewswire/ — In the present day, the Black Ladies‘s Well being Crucial (BWHI) hosts the primary public assembly of the Uncommon Illness Variety Coalition (RDDC). RDDC seeks to deal with the urgent challenges confronted by marginalized populations and establish potential options. Led by BWHI and comprised of a various group of healthcare organizations, affected person advocacy teams, and trade specialists, the RDDC is poised to attain motion within the years to come back by:

“RDDC has an enormous mandate, with COVID our work couldn’t be extra essential” -Linda Goler Blount, BWHI President & CEO


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BWHI Rare Disease Diversity Coalition Formed To End Racial Disparities and Health Inequities in Rare Disease, Diagnosis, Research and Treatment in Communities of Color.                  
www.RareDiseaseDiversity.org
BWHI Uncommon Illness Variety Coalition Fashioned To Finish Racial Disparities and Well being Inequities in Uncommon Illness, Prognosis, Analysis and Therapy in Communities of Colour.
www.RareDiseaseDiversity.org
Black Women's Health Imperative (PRNewsfoto/Black Women’s Health Imperative)
Black Ladies’s Well being Crucial (PRNewsfoto/Black Ladies’s Well being Crucial)
  • Lowering racial disparities within the uncommon illness neighborhood;
  • Figuring out and advocating for evidence-based options to alleviate the disproportionate burden of uncommon ailments on communities of shade; and
  • Serving to to attain better equality inside the uncommon illness neighborhood

The RDDC was established at a pivotal time, as the US continues to grapple with the affect of the COVID-19 pandemic, and the manifestly evident racial disparities that exist relating to an infection charges, remedy and entry to care.

The coalition‘s preliminary public assembly, will commemorate the upcoming worldwide Uncommon Illness Day, and can faucet into the collective experience and experiences of assorted stakeholders to boost consciousness of the work. The assembly will happen just about at present, February 23, 2021, from 1:00 P.M.-3:00 P.M. EST. Moderated by Emmy Award-Successful anchor Lesli Foster, the assembly will function participation by main uncommon illness specialists from high healthcare organizations together with the American Medical Affiliation, Nationwide Medical Affiliation, the Nationwide Hispanic Medical Affiliation, and the Asian & Pacific Islander American Well being Discussion board. Remarks can even be provided by Congressman G. Okay. Butterfield (D-NC), Dr. Marcella Nunez-Smith, Chair of the White Home Covid-19 Well being Fairness Job Power, and NBA champion Alonzo Mourning, who suffered from focal segmental glomerulosclerosis, a uncommon kidney dysfunction, and had a double kidney transplant in 2003.

RDDC has simply launched its 2021 Motion Plan entitled “Charting the Path Ahead for Fairness in Uncommon Illnesses”, that lays out priorities which the coalition will probably be enterprise to deal with the challenges that uncommon illness sufferers of shade face. At www.RareDiseaseDiversity.org, RDDC now has an internet site to share assets, promote affected person tales, present updates on their work, and in any other case interact with the uncommon illness neighborhood.

“RDDC has an enormous mandate, however our work couldn’t be extra essential. As COVID-19 units its sights on individuals of shade and sufferers dwelling with uncommon and power ailments, the people who exist on the intersection of those two realities want devoted advocacy and coverage change now greater than ever,” stated Linda Goler Blount, BWHI President and CEO. 

“Racial bias is entrenched in our healthcare system and deeply lowers the standard of look after sufferers of shade. RDDC is working to coach, help and empower uncommon illness sufferers of shade and their caregivers to allow them to be their very own advocates,” stated Dr. Elena Rios, President & CEO of the Nationwide Hispanic Medical Affiliation.

“The work of RDDC is vital with a purpose to tackle the well being inequities that individuals of shade with uncommon illness expertise. RDDC is targeted on elevating consciousness round these well being inequalities, lowering racial disparities and advocating for evidence-based options,” stated Juliet Okay. Choi, Chief Government Officer of Asian & Pacific Islander American Well being Discussion board.

RDDC Steering Committee Member

Group

Place

Linda Goler Blount, MPH

Black Ladies’s Well being Crucial

President & CEO

Lauren Lee, MA

NephCure

Government Vice President, Stakeholder Engagement

Marshall Summar, MD

Kids’s Nationwide Hospital

Chief, Division of Genetics and Metabolism; Director, Uncommon Illness Institute; Board Chair of NORD

Juliet Okay. Choi, JD

Asian & Pacific Islander American Well being Discussion board (APIAHF)

Chief Government Officer

Elena Rios, MD

Nationwide Hispanic Medical Affiliation

President

Christian Rubio

World Genes

Vice-President, Strategic Development

Brian Thompson, MD

Affiliation of American Indian Physicians

Board of Administrators Member

Aletha Maybank, MD, MPH

American Medical Affiliation

Chief Well being Fairness Officer And Vice President

Garfield Clunie, MD

Nationwide Medical Affiliation

Board of Trustees and Treasurer

Beverley Francis-Gibson, MA

Sickle Cell Illness Affiliation of America

President

Yousra Yusuf, MPH

South Asian Public Well being Affiliation

President

Eric Dube, PhD

Travere Therapeutics

CEO

Amy Hinojosa

MANA Nationwide

President and CEO

Eve Dryer

Travere Therapeutics

Government Director, Affected person Advocacy

Shonta Chambers, MSW

Affected person Advocate Basis

Principal Investigator, SelfMade Well being Community

Kimberly Haugstad, MBA

ACTion Companions

President

Tamar Thompson, MS

Alexion Prescribed drugs, Inc.

Vice President US Authorities Affairs & Coverage

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

Alfred Avenue Baptist Church

Deputy Chief Working Officer

Cassandra McCullough, MBA

Affiliation of Black Cardiologists

President & CEO

Pamela Worth, RN

Balm In Gilead

Deputy Director

Ashley John, MS

Biotechnology Innovation Group

Director, Affected person Advocacy and Alliances

Tammy Boyd, MPH, JD

Black Ladies’s Well being Crucial

Chief Coverage Officer & Counsel

John Burns

Burns Brothers

Managing Associate

Kim Smith-Whitley, MD

Kids’s Hospital of Philadelphia

Medical Director of Hematology and Director of the Complete Sickle Cell Middle

Laura Weidner, JD

Epilepsy Basis of America

VP of Authorities Affairs and Advocacy

Julia Jenkins, MA

EveryLife Basis

Government Director

Donna Cryer, JD

World Liver Institute

CEO

Rev. Matthew L. Watley, M.Div.

Kingdom Fellowship AME Church

Senior Pastor

C. Grace Whiting, JD

Nationwide Alliance for Caregiving

President and CEO

Millicent Gorham, MBA

Nationwide Black Nurses Affiliation

Government Director

Lauren Lee, MA

NephCure

Government Vice President, Stakeholder Engagement

Debbie Drell

NORD

Director of Membership Providers

Saira Sultan, JD

PCORI Advisory Panel on  Uncommon Illness

Member

Courtney Pieczynski Keplinger, MBA

Vertex Prescribed drugs

Senior Director, Public Coverage and Alliance Improvement (Pipeline)

In regards to the Black Ladies’s Well being Crucial
The Black Ladies’s Well being Crucial is a nationwide non-profit group devoted to advancing well being fairness and social justice for Black girls throughout generations, via coverage, advocacy, schooling, analysis, and management improvement. The group identifies essentially the most urgent well being points that have an effect on the nation’s 22 million Black girls and ladies and invests in one of the best of one of the best methods that may accomplish its targets. For extra data, please go to www.bwhi.org 

Media Contact: Priscilla Clarke, Clarke PR, (202)723-2200, [email protected] 

To View The RDDC Assembly go to BWHI YouTube: https://bit.ly/2ZLIvIV
RDDC Web site: https://www.rarediseasediversity.org/events

BWHI Social Media

Hashtag: #RiseForRare
Web site:   www.RareDiseaseDiversity.org
Instagram: https://www.instagram.com/blkwomenshealth/  (@blkwomenshealth)
Twitter: https://twitter.com/blkwomenshealth 
Fb: https://www.facebook.com/BlackWomensHealthImperative/
YouTube: https://www.youtube.com/c/BlackWomensHealthImperative
LinkedIn: https://www.linkedin.com/company/black-women%27s-health-imperative/

SOURCE BWHI Uncommon Illness Variety Coalition

Associated Hyperlinks

http://www.bwhi.org

— to www.prnewswire.com

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