Rare Disease Coalition opens its doors to new members


An estimated 30 million Americans suffer from a rare disease.

Photo: Rare Disease Diversity Coalition / Courtesy

The Rare Disease Diversity Coalition is inviting Latinx organizations that fight for patient advocacy and community health to join them in working to improve health outcomes for people of color who suffer from diseases. rare.

On Tuesday, February 23, 2021, from 1:00 to 3:00 pm, the Rare Diseases Diversity Coalition (RDDC) will virtually host its inaugural meeting. RDDC welcomes all Latinx healthcare and patient advocacy organizations to join its coalition of healthcare associations, industry experts, and patient advocacy groups to address the big issues around inequities in healthcare. health of multicultural families living with a rare disease. To attend the meeting, you can register at: www.RareDiseaseDiversity.org

More than 30 million Americans, nearly 1 in 10, have a rare disease. For minority patients who suffer from them, racial disparities have created a crisis.

“To address these inequities, we must fully understand the impact on diverse populations by committing more support, funding and resources for research while, at the same time, striving to dismantle other systemic structures that support inequity and injustice,” said the Dr. Elena Ríos, president and CEO of the National Hispanic Physicians Association (NHMA) and member of the RDDC Steering Committee. That is why it is important that more health organizations that support Latinx communities join the Coalition. There is much work to be done.

An estimated 30 million Americans are living with one or more than 7,000 rare diseases. The National Institutes of Health have defined a rare disease as any condition or condition that affects fewer than 200,000 people in the United States. Only 10% of rare diseases have a Food and Drug Administration-approved treatment, and it can take an average of five years and visits with more than seven doctors to reach an accurate diagnosis. For people of color, barriers to optimal health are even greater due to racial disparities in access to affordable care and service delivery, leading to delays in diagnosis.

RDDC’s mission is to identify and promote evidence-based solutions to alleviate the disproportionate burden of rare diseases in communities of color. Join us.

Learn more at www.RareDiseaseDiversity.org #RiseForRare.

Dra. Elena Ríos, President and CEO of the National Association of Hispanic Physicians (NHMA).

About the National Hispanic Medical Association

The National Hispanic Medical Association (NHMA) is a non-profit association representing the interests of 50,000 certified Hispanic physicians in the United States. NHMA provides legislators, health care providers and their partners with specialized information and support to strengthen the delivery of health services to Hispanic communities across the country. NHMA works closely with the White House, federal agencies and Congress, the private sector, foundations, and national Hispanic organizations.

About the Black Women’s Health Imperative (BWHI)

The Black Women’s Health Imperative (BWHI), founder of the Rare Disease Diversity Coalition, is a national nonprofit organization dedicated to promoting health equity and social justice for black women, through policy, activism, education, research and leadership development. For more than 35 years, the organization has identified the most pressing health problems affecting the 22 million black women and girls in the country. For more information visit www.bwhi.org.

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