Leading Change in Rare Disease: What We Can Learn from the GBS-CIDP Foundation

Patient advocacy leaders work every day to make sure patient voices do more than get heard. They want those voices to shape decisions, improve care, guide research, and advance policies that affect patients’ lives. In this episode of Patient Advocacy Voices, we hear from an organization doing exactly that. Host Eric Racine is joined by co-host Melissa Dupont, Global Public Affairs Lead, Neurology at Sanofi, for a conversation with Lisa Butler, President and CEO of the GBS-CIDP Foundation. Through patient listening, global expert collaboration, data generation, and advocacy, the GBS-CIDP Foundation is helping ensure that patient perspectives inform standards of care, research priorities, regulatory conversations, and the everyday support for people living with Guillain-Barré Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), and Multifocal Motor Neuropathy (MMN). Lisa shares how her family's experience with GBS inspired a lifelong commitment to advocacy and explains how the Foundation is helping transform rare disease care by bringing patients into conversations from the very beginning. The discussion highlights how the Foundation combines peer connections, global medical expertise, data, advocacy, and research to support patients, establish common clinical language, partner with regulators, strengthen education, and advance research grounded in what matters most to patients.In this episode, you'll hear about:How patient input can shape research, clinical terminology, care standards, and regulatory conversationsWays to use registries, symptom tracking, and community engagement to identify unmet needs and guide research prioritiesWhy patient-to-patient connection remains essential, even as digital tools and data become more importantHow partnerships with healthcare providers, industry, and regulators can accelerate innovationWhy hope must be grounded in listening and paired with action to build a better future for patients as science and care continue to evolveThis episode offers a practical look at what it really means to embed patient advocacy across the full lifecycle of care and innovation. For advocacy leaders in any disease community, the conversation provides a powerful example of how patient experience can be turned into evidence, action, and lasting impact.