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Rare Disease Diversity Coalition to Host 2nd Annual RISE Awards on the Eve of Rare Disease Day

The Rare Disease Diversity 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. (PRNewsfoto/Black Women's Health Imperative)

News provided by

Black Women's Health Imperative

Feb 25, 2025, 10:46 ET

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WASHINGTON, Feb. 25, 2025 /PRNewswire/ -- The Rare Disease Diversity Coalition (RDDC) announces its 2nd Annual RISE (Resilient, Impassioned, Strong, Empowered) AWARDS and 3rd Annual Rare Disease Day Reception on February 27, 2025, at the Le Meridien Madison Hotel in Washington, DC from 6-8pm. The event, will be hosted by award-winning journalist and news anchor Adrianna Hopkins in celebration of champions within the rare disease community.

The evening will honor outstanding contributors to the rare disease community, including individuals, organizations, and legislative champions who have demonstrated exceptional commitment to improving outcomes for underrepresented patients.

The RISE Awards come at a significant moment as RDDC approaches its 5th anniversary, marking half a decade of transformative work in the rare disease space. During this milestone year, the coalition has achieved remarkable growth, participating in Rare Disease Awareness Events sponsored by partners such as the FDA and NIH, hosting a Hill Briefing during National Minority Health Awareness Month in April, and continuing to speak at key events to advocate for equitable policies and patient-centered solutions. These efforts underscore RDDC's unwavering commitment to driving systemic change and improving outcomes for historically underrepresented rare disease communities.

"As we approach our 5th anniversary, we're witnessing the fruition of our vision to transform the rare disease landscape," said Jenifer Waldrop, Executive Director of RDDC. "Reaching over 90 partners reflects both our growth and our impact. While there is still much to be done, this milestone reaffirms the power of collective action in creating a more inclusive and just healthcare system for all rare disease patients from making our groundbreaking research accessible in multiple languages to forging strategic partnerships that amplify our voice in influential spaces. These achievements strengthen our ability to improve standards of care for all communities affected by rare diseases."

This celebration coincides with several significant coalition achievements that demonstrate RDDC's expanding influence. The coalition's landmark "Study on Inequities in the Rare Disease Community: The Voices of Patients and Caregivers" is now expanding its reach and is available in Spanish. Additionally, RDDC has secured a partnership with the National Minority Quality Forum to present four specialized sessions during their annual April conference, creating a powerful platform to advance rare disease conversations among key stakeholders.

"The RISE Awards represent the heart of our mission—recognizing those who embody resilience and determination in the face of rare disease challenges, as well as those who are helping to make a difference in the health outcomes of these patients," adds Linda Goler Blount, chair and founder of RDDC and president of the Black Women's Health Imperative. "As we gather to honor these champions, we're also celebrating the growing community that makes our work possible and setting the stage for even greater impact in the years ahead."

For more information about RDDC, the RISE Awards, and ways to get involved, visit www.rarediseasediversity.org.

About RDDC:
The Rare Disease Diversity Coalition (RDDC) is dedicated to promoting diversity, equity, and inclusion within the rare disease community. Through advocacy, education, and collaboration, RDDC aims to empower individuals and families affected by rare diseases while fostering a more equitable healthcare landscape.

Media contact: [email protected]

SOURCE Black Women's Health Imperative

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