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Rare Disease Diversity Coalition Honors Champions and Unveils Resources at 2nd Annual Rare Disease Day Reception

WASHINGTON, March 14, 2024 /PRNewswire/ — The Rare Disease Diversity Coalition (RDDC) proudly hosted its 2nd Annual Rare Disease Day Reception and 1st Annual RISE (Resilient, Impassioned, Strong, Empowered) AWARDS on February 28, 2024, at Long View Gallery in Washington, DC. The event, attended by a larger audience than last year, demonstrated the growing momentum within the rare disease community.

The evening was made possible by the generous support of sponsors Novartis AG and Vertex Pharmaceuticals, whose commitment helped shape an unforgettable gathering. RDDC expressed heartfelt appreciation for their pivotal role in bringing the event to fruition.

The highlight of the evening was the awards ceremony, which honored nine outstanding contributors to the rare disease community, including individuals, organizations, and legislative champions. Among them were:

  • Genesis Jones, whose poignant poem about her sickle cell journey touched hearts and set a profound tone for the evening.
  • Dr. Marshall Summar, recognized for his exemplary service as a provider.
  • Sarita Edwards, celebrated for her resilience and dedication as a caregiver.
  • The Patient Advocate Foundation and the FDA’s Office of Orphan Product Development, acknowledged for their advocacy and government agency health equity efforts.
  • Travere Therapeutics and Amgen Rare Disease, applauded for their impactful work in the industry.
  • Senators Cory Booker (D-NJ) and Tim Scott (R-SC), honored for their bipartisan legislative efforts in advancing the rare disease cause.

In a poignant moment, Genesis Jones, the distinguished patient awardee, delivered a heartfelt poem about her experience with sickle cell. Her courageous narrative epitomized the profound impact of personal stories in our collective battle against rare diseases, leaving an indelible mark on all in attendance.

The reception also served as a platform to introduce new resources developed by the RDDC Patient and Caregiver Working Group. Notable among these were the Patient Advocacy Organization DEI Assessment and an Executive Summary from the Barriers to Care Survey, reflecting responses from historically underrepresented populations. These tools play a crucial role in guiding ongoing efforts to promote diversity, equity, and inclusion across the rare disease landscape.

Attendee feedback emphasized the captivating and enlightening nature of the personal stories shared, underscoring the importance of mentorship and collective determination within the community.

Looking ahead, RDDC is energized by the support, stories, and successes shared at this year’s Rare Disease Day Reception. The coalition extends sincere gratitude to all attendees, partners, and contributors for their dedication to forging a path to a more inclusive and equitable future for the rare disease community.

For more information about RDDC and its initiatives, visit

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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