Inclusion, Diversity, Equity, and Access (IDEA)
The Undiagnosed Diseases Network (UDN) is dedicated to ensuring that we are a resource to all on their diagnostic odysseys and that participants are treated with cultural awareness and sensitivity.
Through a project funded by the Warren Alpert Foundation, the UDN Data Management Coordinating Center has sought to increase the representation of participants from underserved communities and rapidly growing immigrant populations. With this goal in mind, the UDN Data Management Coordinating Center created a plan to increase awareness about rare diseases, the UDN, and research in marginalized communities. This plan involves:
- Adding and refining demographic questions related to race, ethnicity, sex, gender, income, and educational attainment to our application to better understand participants and the disease burden in underrepresented populations
- Designing a course to educate clinicians, researchers, and students from institutions that serve primarily underserved and underrepresented patients on the evaluation of those with undiagnosed and rare conditions
- Encouraging and supporting clinical sites in developing community health partnerships
- Surveying participants and potential participants about barriers they experienced in joining the network
- Organizing and attending events that increase the visibility of the UDN within underserved populations and amongst clinicians who serve underrepresented groups
- Partnering with other organizations and groups within the rare disease space
In 2023, the UDN began its transition to its third iteration. In this new phase, we have included an emphasis on community engagement and outreach to increase access to our network. To that end, we have created a new Community Engagement Committee.
Resources
Publications
Unraveling non-participation in genomic research: A complex interplay of barriers, facilitators, and sociocultural factors
Characteristics of undiagnosed diseases network applicants: implications for referring providers
Reports
RareX DEI Report
RDDC Survey Diversity Equity, and Inclusion Efforts in Rare Disease Organizations
If you are a community health organization looking to collaborate with one of our clinical sites, please contact UDN@hms.harvard.edu.