Celebrating Rare Insight, Knowledge, and Advocacy for Rare Disease Day

The Rare Disease Diversity Coalition Aims to Raise Awareness about Rare Diseases 

WASHINGTON, Feb. 27, 2023 /PRNewswire/ -- On the eve of International Rare Disease Day, the Rare Disease Diversity Coalition (RDDC) – an initiative of the Black Women's Health Imperative – unveils its new survey findings that reveal the current state of diversity, equity, and inclusion (DEI) practices and global initiatives of patient advocacy organizations. This in-depth report uniquely identifies gaps and develops recommendations related to outreach, education, and support among patients of color with rare diseases.

The RDDC chooses to release the report findings on the eve of International Rare Disease Day specifically, as it is a day to raise public awareness about global rare diseases and specifically the rare conditions affecting more than 30 million Americans – and a disproportionate number of patients of color.

"The RDDC provides a platform for historically underserved populations with rare diseases," said Executive Director, Jenifer Waldrop, leader of the RDDC initiative. "Through coalition building and using evidence-based solutions, the RDDC strives to alleviate the disproportionate burden of rare diseases and to address the disparate social, economic, and health effects of systemic racism."

Download the survey report for free here: RDDC Survey Findings

In partnership with Upequity – a leading organization that explores and advances novel ideas, performs evidence-based research, and incubates emerging entities in their journey to becoming organizations that focus on positive change for underserved populations (including women, people of color, LGBTQAI+, the elderly, disabled, rural, and those struggling with limited financial resources) who live with rare and serious chronic health conditions – the RDDC gathered information from patient advocacy organizations focused on rare diseases. The RDDC will host a reception in Washington, DC on Monday, February 27 from 6 to 8 p.m. ET. The reception will feature survey authors and other esteemed speakers, including Stephanie Marshall, Co-Chair of the Rare Disease Diversity Coalition Patient & Caregiver Working Group and Director of Patient Advocacy at The Assistance Fund.

"Rare disease organizations are a lifeline for patients and their families," Marshall said. "The Diversity, Equity, and Inclusion Efforts in Rare Disease Organizations Survey offers insights into current DEI practices in rare disease organizations and actionable recommendations to improve outreach, engagement, and communication to diverse populations."

About the Rare Disease Diversity Coalition

More than 30 million – or 1 in 10 – Americans live with a rare disease. For rare disease patients of color, racial disparities have caused a crisis. Launched in May 2020 by the Black Women's Health Imperative, the RDDC was formed to identify and advocate for evidence-based solutions to alleviate the disproportionate burden a rare disease places on communities of color. For more information on the RDDC's work, visit https://www.rarediseasediversity.org.

About the Black Women's Health Imperative

The Black Women's Health Imperative is the first and only national non-profit organization created for and by Black women dedicated to improving the health and wellness of our nation's 22 million Black women and girls – physically, emotionally, and financially. Our core mission is advancing health equity and social justice for Black women across the lifespan through policy, advocacy, education, research, and leadership development. https://bwhi.org/

For Media Inquiries:
David White
[email protected]
202-471-4228

SOURCE Black Women's Health Imperative