Darby Gavin and Terri Klein share real strategies to improve rural access to rare disease care through data, trust-building, and cultural outreach.
In this episode of Catalyst Convos, hosts Amy Grover and Carrie Ostrea explore the often-overlooked barriers to care faced by rare disease patients in rural communities. Joining them are Darby Gavin from the National Organization for Rare Disorders (NORD) and Terri Klein, President and CEO of the MPS Society.
Darby shares insights from NORD’s national surveys and the Living Rare Study, revealing the disparities in access, mental health support, and care navigation in rural settings. Terri offers a powerful look into the MPS Society’s boots-on-the-ground work—building trust, respecting cultural differences, and delivering direct support through social workers to families in isolated or underserved regions.
They discuss everything from the digital divide and provider education to transportation barriers and the importance of tailored outreach in communities like the Amish and Cherokee Nation. This conversation highlights practical steps organizations can take, as well as the ongoing need to meet families where they are—geographically and emotionally.
Tune in to hear what’s working, what’s still missing, and how we can all play a part in improving healthcare equity for rare disease patients in rural America.
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