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:

www.RareDiseaseDiversity.org

- 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
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