Discover how Inspire partnered with Boston Children’s Hospital and The Ehlers-Danlos Society to uncover systemic barriers to genomic medicine for patients with rare and complex conditions.
Using anonymized patient voice data from Inspire’s EDS/HSD community, this NIH-funded study surfaced structural, emotional, and technological barriers to accessing genetic testing and counseling. The results informed new strategies to support equitable access.
Case Study Highlights Include:
Patient-Centered Barrier Mapping
Explore how Inspire analyzed nearly 2,000 patient posts using a social ecological model—revealing issues like long wait times, provider dismissiveness, and cost concerns.Uncovering Social-Structural Barriers
Over 50% of the barriers identified were social-structural—highlighting systemic access gaps that are often invisible in clinical datasets.Actionable Insights for Equity in Genomics
Find out how these real-world insights are informing support programs, training, and outreach for rare disease communities.
This case study is a must-read for genomic researchers, advocacy leaders, and health equity stakeholders looking to better understand the real-world barriers patients face when seeking genetic care.