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Empowering Black Women Through Revolutionary Health Research

Rare Disease Reception

On February 28, 2024, the Rare Disease Diversity Coalition (RDDC) was thrilled to welcome the community back to Long View Gallery in Washington, DC, for our 2nd Annual Rare Disease Day Reception and 1st Annual RISE (Resilient, Impassioned, Strong, Empowered) AWARDS. Building on the foundation of last year’s inaugural event, this year’s gathering was a vibrant celebration that saw an even greater turnout, signaling a growing momentum within our community.

We owe a tremendous thank you to our sponsors, Novartis AG and Vertex Pharmaceuticals, whose support was pivotal in bringing this event to life. Their commitment helped us create an evening that was not only memorable but also a significant step forward in our collective mission.

The highlight of the evening was marked by an awards ceremony recognizing nine outstanding contributors to the rare disease community. Among them were:

  • Genesis Jones, who touched hearts with a powerful poem about her sickle cell journey, setting a profound tone for the evening.
  • Dr. Marshall Summar, acknowledged 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, both lauded for their community advocacy and efforts in government agency health equity, respectively.
  • Travere Therapeutics and Amgen’s Rare Disease Business Unit, recognized for their impactful work in the industry.
  • Finally, Senators Cory Booker (D-NJ) and Tim Scott (R-SC) were honored for their legislative efforts, demonstrating the critical role of bipartisan congressional support in advancing our cause.

In a poignant moment that stole the spotlight, Genesis Jones, the distinguished patient awardee,  delivered a heartfelt poem about her experience with sickle cell. Her speech moved many attendees to tears and provided a deeply personal touch to the recognition. 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.

This year’s reception also provided an excellent opportunity to introduce new resources developed by the RDDC Patient and Caregiver Working Group. Among these were the Patient Advocacy Organization DEI Assessment and an Executive Summary from our Barriers to Care Survey, which notably drew nearly half its respondents from historically underrepresented populations. These tools are essential in guiding our ongoing efforts to ensure diversity, equity, and inclusion across the rare disease landscape.

Feedback from the evening emphasized how the personal stories shared were not only captivating  but also enlightening, highlighting the essence of areas such as mentorship and the collective drive that fuels our community. It was a powerful reminder of why we gather, why we celebrate, and, most importantly, why we continue to fight for every individual affected by a rare disease.

As RDDC looks to the future, we are energized by the support, stories, and successes shared at this year’s Rare Disease Day Reception. Our earnest gratitude to all who joined us, our partners, and everyone who contributes to making our vision a reality. Together, we are forging a path to a more inclusive, equitable future for the rare disease community.