Rare As One Partner

Children’s National Hospital, Rare Disease Community Education Initiative

The Rare Disease Community Education Initiative at Children’s National Hospital is an educational hub with virtual workshops that will empower providers in rural and underrepresented settings to shorten the diagnostic odyssey, help care for rare disease patients in their current community, and avoid the often-extreme delays in accessing specialty care.

The Rare Disease Community Education Initiative is housed within the Children’s National Hospital’s Rare Disease Institute and will serve as the educational center of the program. The short course consists of four, one-hour modules tailored to health care providers in rural and underrepresented minority settings who care for rare disease patients (i.e., physicians, nurse practitioners, pharmacists, etc.). Some of the topics include rare disease diagnosis and testing strategies, and culturally competent care created in partnership with local community voices.