
Lisa Butler
Make-up artist
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Jul 2, 2026
Leading Change in Rare Disease: What We Can Learn from the GBS-CIDP Foundation
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29:22

Melissa DupontHOST
But let's talk about other partnerships and other cross-disease collaborations you're doing that's really helping to shape this additional work.

Lisa ButlerGUEST
It's so important for us to have a relationship with the FDA so that we can center the patient voice, especially with innovation and and clinical trials, we want the FDA to have a patient voice in a sort of vetted, trusted space to return to as they're evaluating what needs to be done and what the unmet needs are in the treatment landscape.

Lisa ButlerGUEST
And then from there, we launched into patient-focused drug development meetings with the FDA in Guillain-Barre, CIDP, and MMN.

Lisa ButlerGUEST
And then we brought in the patients, right? And we moderated a conversation, the FDA attended, of course, and now they have that voice of the patient report, it's called, it's on our website, it's public, but the FDA has the patient voice now in this space that they can return to and refer to as they're looking at treatments.

Lisa ButlerGUEST
I also think it's important for us to participate in with others where we can collaborate and maybe have a stronger voice.

Melissa DupontHOST
But what we didn't talk about is any of the barriers that you're seeing or your experience around patient access.