Rare Disease Clinical Care Committee (RDc3)

About the Working Group

This group is primarily composed of clinicians focused on enhancing collaboration and harmonization among clinical care teams involved in the diagnosis and treatment of rare diseases. The RDc3 working group includes 28 clinicians representing 14 clinical departments within the UNC School of Medicine. The group’s core mission is to identify existing multidisciplinary care teams and pinpoint key areas where new multidisciplinary care is needed. Additionally, the committee plays a vital role in coordinating care for patients from undiagnosed clinics, ensuring they are appropriately referred to either a specialized multidisciplinary team or an ultra-rare disease clinic.

Current projects:

Specialty Clinic List

This list was developed by the Rare Disease Clinical Care Committee (RDc3), highlighting multidisciplinary and specialty care clinics available at UNC.

Top 20 Rare Disease List

This list, formulated by the RDc3 working group, includes 20 rare diseases spanning various medical specialties. These diseases were prioritized by the RDc3 based on their assessment of the highest areas of need at UNC. Priority was given to conditions with existing multidisciplinary clinics or areas of expertise at UNC, as well as those where UNC demonstrated either a particular strength or a critical gap in care. Prevalence was also considered in the selection process.

Moving forward, the RDc3 will help define key clinical characteristics for each condition and collaborate with the Rare Disease Informatics, Integration, and Implementation (RDi3) team to develop EHR algorithms tailored to these top-priority diseases. Once this foundational work is complete, diseases will be expanded upon.