Black Women’s Health Imperative- “Charting the Path Forward for Equity in Rare Diseases”

Events DC

Watch Event today at 1:00- 3:00 pm EST

More than 30 million Americans—nearly 1 in 10—have a rare disease. For rare disease patients of color, racial disparities have caused a crisis.

The Black Women’s Health Imperative launched the Rare Disease Diversity Coalition to address the extraordinary challenges faced by rare disease patients of color. The Coalition brings together rare disease experts, health, and diversity advocates, and industry leaders to identify and advocate for evidenced-based solutions to alleviate the disproportionate burden of rare diseases on communities of color.

RARE DISEASE DIVERSITY COALITION (RDDC) ANNOUNCES LAUNCH AND CONVENING ON FEBRUARY 23RD WITH TOP MEDICAL 

INDUSTRY LEADERS TO ADDRESS SOLUTIONS TO END RACIAL DISPARITIES IN RARE DISEASE

NBA Champion Alonzo Mourning, Rep. G.K. Butterfield, White House COVID Health Equity Task Force Chair Dr. Marcella Nunez-Smith To Join Leading Rare Disease Experts For RDDC Convening to Discuss Diagnosis, Research and Treatment, Held in Commemoration of Rare Disease Day

WASHINGTON, D.C. -The recently launched, one of its kind, Rare Disease Diversity Coalition (RDDC) will convene on February 23, 2020 with industry leaders and special guest Alonzo Mourning, Congressman G.K. Butterfield, White House COVID Health Equity Task Force Chair Dr. Marcella Nunez-Smith, to discuss the impact that racial disparities, inequities, access to care and Covid-19 have on rare disease patients of color, with a mission to explore viable solutions.  RDDC will develop a white paper to lay out a series of recommendations to policymakers and the wider healthcare industry that they maintain will address the challenges that rare disease patients of color face.

WHO: Rep. G.K. Butterfield (D-NC), Dr. Marcella Nunez-Smith-Chair White House Covid-19 Health Equity Task Force, Black Women’s Health Imperative (BWHI), Rare Disease Diversity Coalition, NBA Champion Alonzo Mourning, over 20 top organizations including; American Medical Association, Children’s National Hospital, National Medical Association, National Hispanic Medical Association, Global Genes, Travere Therapeutics, Asian & Pacific Islander American Health Forum, National Organization for Rare Disorders, Epilepsy Foundation, The National Alliance for Caregiving, in addition to healthcare industry experts, lawmakers, patient advocacy groups and stakeholders dedicated to alleviating health disparities and inequities for people of color with rare disease.

WHAT: The launch of RDDC and the first convening will occur virtually on February 23rd with leading rare disease experts and special guest NBA champion and advocate Alonzo Mourning. Mourning suffered from focal glomerulosclerosis, a rare kidney disorder, and had a double kidney transplant in 2003. The meeting will take place prior to Rare Disease Day on February 28, 2021, which is recognized globally to raise awareness amongst the public and policy makers about the impact of rare disease on patients’ lives to help impact solutions. The meeting will commemorate international Rare Disease Day, and produce a 2021 Action Plan entitled ““Charting the Path Forward for Equity in Rare Diseases”

WHEN: February 23, 2021 from 1:00 P.M.-3:00 P.M. ET

WHERE: Virtually via Zoom 

To View RDDC Meeting visit BWHI YouTube: https://bit.ly/2ZLIvIV  

RDDC Website: https://www.rarediseasediversity.org/events  

Media: Open to Media

WHY: RDDC was established by BWHI and comprised of a diverse group of healthcare organizations, patient advocacy groups and industry experts. It was launched at a pivotal time as the impact of the COVID-19 pandemic continues to reveal the glaringly evident racial disparities that exist regarding infection rates, treatment and access to care.  The RDDC also recently launched the Rise for Rare Campaign (#RiseForRare), which seeks to bring awareness to their work to address the challenges that marginalized populations face when seeking diagnosis and accessing treatment for a rare disease.

More information is available at: www.rarediseasediversity.org

Media Contacts:  Priscilla Clarke, Clarke PR, 240-476-9643, priscilla@clarkepr.com 

ABOUT RDDC

Black Women’s Health Imperative launched the Rare Disease Diversity Coalition to address the extraordinary challenges faced by rare disease patients of color. The Coalition brings together rare   disease experts, health and diversity advocates, and industry leaders to identify and advocate for evidence-based solutions to alleviate the disproportionate burden of rare diseases on communities of color.  An estimated 30 million Americans have a rare disease. By some approximations, it can take an average of five years and consultations with over seven clinicians to reach an accurate diagnosis for a rare disease. Additionally, only 10% of rare diseases have a treatment approved by the Food and Drug Administration.

For minorities with a rare disease, these challenges are compounded. Minorities are underrepresented in genome-wide association studies and clinical research trials, leading to a lack of understanding about effective treatments. Additionally, broader racial disparities in access to affordable care and social determinants of health create significant added barriers.  RDDC is focused on reducing racial disparities in the rare disease community. The Coalition’s work is led by BWHI and a leadership steering committee comprised of advocacy, community, and industry leaders with the following goals:

  • Reduce racial disparities in the rare disease community
  • Identify and advocate for evidence-based solutions to alleviate the disproportionate burden of rare diseases on communities of color
  • Help achieve greater equality within the rare disease community

Social Media

Hashtag: #RiseForRare

Website: www.rarediseasediversity.org

Website: www.bwhi.org 

Instagram: https://www.instagram.com/blkwomenshealth/ (@blkwomenshealth)

Twitter: https://twitter.com/blkwomenshealth 

Facebookhttps://www.facebook.com/BlackWomensHealthImperative/

YouTube: https://www.youtube.com/c/BlackWomensHealthImperative

LinkedIn: https://www.linkedin.com/company/black-women%27s-health-imperative/

Website. www.rarediseasediversity.org

To View RDDC Meeting visit BWHI YouTube: https://bit.ly/2ZLIvIV  (no password required)