On February 27, 2023, the Rare Disease Diversity Coalition (RDDC) held its inaugural Rare Disease Day reception at Longview Gallery in our nation’s capital. The Washington, DC evening was cold and rainy, but that didn’t stop the rare disease community from stepping out and showing its support!

The intimate setting provided the ideal forum for our RDDC Patient and Caregiver Working Group to showcase the recently completed Report of Survey Findings: Diversity, Equity, and Inclusion (DEI) Efforts in Rare Disease Organizations. The report highlights the current state of DEI practices and initiatives within the patient advocacy organizations in the rare disease industry. The information analyzed identifies gaps in community engagement and communications, provides recommendations related to outreach and education, and methods to support patients of color with a rare disease.

In addition to showcasing our completed report findings, the RDDC Patient and Caregiver Working Group had a chance to promote its next survey, launched in partnership with the National Organization for Rare Disorders (NORD). This project – the first of its kind – will survey underrepresented rare disease patients and caregivers in an effort to better understand their personal experiences and perspectives within the rare disease community.

RDDC looks forward to hosting more Rare Disease Day receptions and related events in the future, and to share the wonderful projects that our working groups are accomplishing in advocacy of the rare disease community. We want to give a huge thank you to all of the guests and partners who joined us in making our first Rare Disease Day reception a major success.

Get a sneak peak at our event and commentary from attendees about the RDDC.