Rare Disease Diversity Coalition to Host 2nd Annual Rare Disease Day Reception

The Rare Disease Day Coalition (RDDC) is thrilled to announce the upcoming 2nd Annual Rare Disease Day Reception, including their inaugural RISE awards, scheduled for February 28th, 2024, in Washington, DC. The reception, set to take place at LongView Gallery from 6:00 pm to 8:00 pm ET, will honor and celebrate the extraordinary contributions of rare disease health equity champions.

“We are excited to acknowledge and celebrate the individuals who have shown extraordinary resilience, passion, strength, and empowerment in their commitment to rare disease advocacy,” said Jenifer Waldrop, Executive Director, RDDC. “These awards reflect our deep appreciation for the unwavering dedication of catalysts for advancement within the rare disease community.”

During this event, RDDC will present the RISE (Resilient, Impassioned, Strong, and Empowered) awards to individuals who have demonstrated exceptional dedication to advancing the mission and vision of RDDC. These awardees have demonstrated steadfast commitment and outstanding efforts in addressing the unique challenges faced by those affected by rare diseases.

“As we gear up for the 2nd Annual Rare Disease Day Reception, we are excited to recognize and applaud the exceptional efforts of rare disease health equity champions,” said BWHI President Linda Goler Blount, MPH. “With the debut of the Rare Disease RISE Awards, we shine a spotlight on individuals whose resilience, passion, strength, and empowerment have fueled progress in our shared mission.”

In addition to the Rare Disease Day Reception, in a partnership with National Organization for Rare Disorders, RDDC has developed a national survey targeting underrepresented rare disease patients and caregivers. Initial findings show that of the 2,848 respondents, 78 percent are living with a rare disease. Almost 20 percent of respondents delayed care or decided not to receive care because they were experiencing housing instability, food insecurity or worried about basic needs; of these 20 percent, over 30 percent of them identify as living below the poverty line. Additionally, 50 percent of respondents have delayed getting the care they need due to caregiving responsibilities, of these 50 percent, over 60 percent of the respondents identify as hispanic.

The RDDC Rare Disease Day Award Reception serves as a platform to recognize and express gratitude to those who have made a significant impact on the rare disease community. It is an opportunity to unite rare disease patients, advocates, healthcare professionals, and supporters in a shared commitment to improving the lives of individuals with rare diseases.

RDDC encourages all stakeholders, including patient advocates, healthcare professionals, policymakers, and the public, to join us for an inspiring evening dedicated to raising awareness and fostering collaboration in the rare disease space. Register for the event at https://www.rarediseasediversity.org/rddc-events.

About Rare Disease Day Coalition (RDDC):
Black Women’s Health Imperative launched the Rare Disease Diversity Coalition™ (RDDC™) to address the extraordinary challenges faced by underserved populations with rare diseases. The Coalition brings together rare disease experts, health and diversity advocates, and industry leaders to identify and advocate for evidence-based solutions to alleviate the disproportionate burden of rare diseases on historically marginalized populations. For more information, please visit rarediseasediversity.org.

About Black Women’s Health Imperative 
Black Women’s Health Imperative is a national non-profit organization dedicated to advancing the health and well-being of Black women and girls. With a 40-year history of groundbreaking advocacy and research, BWHI remains committed to addressing the unique health challenges faced by Black women and ensuring their voices are heard in healthcare policy and practice. BWHI’s goal is to lead the effort to solve the most pressing health issues that affect Black women and girls globally. Through investments in evidence-based strategies, we deliver bold new programs and advocate health-promoting policies.

Media contact: media@bwhi.org

SOURCE Black Women’s Health Imperative