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Celebrating Resilience: The 2nd Annual RISE Awards

On the evening of February 27, 2025, the Rare Disease Diversity Coalition (RDDC) will proudly host its 2nd Annual RISE Awards as part of the Rare Disease Day celebration. The prestigious event is set to take place at the Le Meridien Madison Hotel in Washington, D.C., from 6-8 PM, featuring the remarkable award-winning journalist Adrianna Hopkins as the event host.

The RISE Awards are designed to honor exemplary contributors within the rare disease community, which includes individuals, organizations, and legislative leaders who have shown outstanding commitment to enhancing outcomes for underrepresented patients. As we initiate this special evening, we recognize the champions making a significant impact in the journey of rare disease advocacy.

This year marks a significant milestone for RDDC as they approach their 5th anniversary, celebrating half a decade of transformative efforts in the rare disease sector. Over these years, the coalition has shown remarkable expansion and impact by participating in various Rare Disease Awareness Events sponsored by partnerships like the FDA and NIH. Additionally, RDDC hosted a pivotal Hill Briefing during the National Minority Health Awareness Month in April, continuing to advocate for equitable policies and patient-centered solutions.

Jenifer Waldrop, Executive Director of RDDC, stated, “As we approach our 5th anniversary, we're witnessing the fruition of our vision to transform the rare disease landscape. Reaching over 90 partners reflects both our growth and our impact.” This remarkable growth is not only numerical; it showcases the coalition's commitment to creating a more inclusive healthcare system for all rare disease patients. They have made efforts to make groundbreaking research accessible in multiple languages, thereby fostering a wider reach and understanding within diverse communities.

As they step into this celebration, several significant achievements underline RDDC’s swelling influence. The coalition’s landmark study, “Study on Inequities in the Rare Disease Community: The Voices of Patients and Caregivers,” is seeing broader reach and is now available in Spanish. In a bid to further broaden their platform, RDDC has also partnered with the National Minority Quality Forum to present four specialized sessions during their annual April conference, which signifies their dedication to advancing discussions on rare diseases among key stakeholders.

In the words of Linda Goler Blount, chair and founder of RDDC, “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.” The gathering on February 27 not only aims to honor these heroes but also aims to celebrate the growing community that enables the work of RDDC. This event sets a promising stage for even more impactful initiatives in the years to come.

For those interested in learning more about RDDC, the upcoming RISE Awards, and opportunities to engage with their efforts, please visit www.rarediseasediversity.org. The Rare Disease Diversity Coalition remains steadfast in its mission to promote diversity, equity, and inclusion within the rare disease community, seeking to empower individuals and families affected by rare diseases and strive for a more equitable healthcare environment.

Join us in commemorating not just resilience but also the unity and collective effort required to improve outcomes for all in the rare disease community. Together, we can continue to drive change and foster understanding.