))
Bridging the Gap: Rural Healthcare Access in Rare Disease
Manage episode 489223654 series 3611886
Content provided by Catalyst Pharmaceuticals. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Catalyst Pharmaceuticals or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://ppacc.player.fm/legal.
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.
Follow Us
- X @CatalystForRare
- Facebook @CatalystForRare
- LinkedIn @catalystforrare
Presented by Catalyst Pharmaceuticals
www.CatalystPharma.com
4 episodes
Share
