Patient Advocacy Voices
Patient advocacy is a critical area in healthcare that is transforming the lives of patients across the country by helping them overcome barriers to access and care. Join Sanofi US Head of Public Affairs and Patient Advocacy, Eric Racine, and his co-hosts to meet some of the unsung heroes leading patient advocacy organizations. In each episode, we will discuss the challenges each group has faced and share actionable insights to address gaps and help make the U.S. healthcare system work better for patients. Whether you're a seasoned advocate or new to the field, we hope this podcast will open your mind to new ideas and inspire action. Subscribe now and become part of a community dedicated to making a difference for patients.
This podcast is provided as a resource only and does not constitute an endorsement by Sanofi of any particular organization or its programming. Additional resources on this topic may be available and should be investigated.
Patient Advocacy Voices
Leading Change in Rare Disease: What We Can Learn from the GBS-CIDP Foundation
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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 conversations
- Ways to use registries, symptom tracking, and community engagement to identify unmet needs and guide research priorities
- Why patient-to-patient connection remains essential, even as digital tools and data become more important
- How partnerships with healthcare providers, industry, and regulators can accelerate innovation
- Why hope must be grounded in listening and paired with action to build a better future for patients as science and care continue to evolve
This 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.