• Leading Change in Rare Disease: What We Can Learn from the GBS-CIDP Foundation
    2026/07/02

    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.

    続きを読む 一部表示
    38 分
  • Inside the Alliance for Aging Research: Closing the Gap Between Innovation and Patient Access
    2026/05/28

    What does it take to make sure innovation, policy, and public health actually work for older adults? Too often, patients and caregivers face a hard path from diagnosis to treatment, shaped by Medicare complexity, out-of-pocket costs, communication gaps, and administrative barriers that get in the way of care.

    In this episode of Patient Advocacy Voices, host Eric Racine is joined by co-host Katie Oppenheim, Head of US Government Relations at Sanofi, for a conversation with Sue Peschin, President and CEO of the Alliance for Aging Research. Together, they discuss how aging research, Medicare policy, vaccine education, and patient advocacy come together to shape access and outcomes for older adults.

    Sue shares how the Alliance for Aging Research is working to change the narrative on healthy aging, advance evidence-based policy, and help patients better navigate the system. Drawing both on her leadership experience and her personal perspective as a caregiver, she offers practical insight into the barriers older adults face and what it takes to reduce them.

    In this episode, you’ll hear about:

    • How Medicare benefit design, affordability, and utilization management can affect real patient access
    • Why aging research matters for chronic disease, infectious disease, and healthier lives as people age
    • How advocacy organizations help translate complex policy changes into useful guidance for patients and families
    • Why vaccine education and trusted communication still matter, especially for older adults
    • What mission-driven leadership looks like during times of policy and public health change

    This episode offers practical lessons for advocacy leaders, policymakers, and anyone working to make the healthcare system easier to navigate for older adults and caregivers.

    続きを読む 一部表示
    39 分
  • The “Last Mile” in Cancer Care: What It Takes to Turn Innovation Into Access
    2026/04/29

    When someone is diagnosed with cancer, the expectation is that care begins quickly and smoothly. In reality, many patients and caregivers find themselves navigating a complicated system, juggling access barriers, approvals, and logistics before treatment even begins.

    In this episode of Patient Advocacy Voices, host Eric Racine is joined by Meagan O’Neill, Executive Director of the Association of Cancer Care Centers (ACCC), alongside co-host Rachel Solomon of Sanofi. Together, they explore how cancer care is shaped not just by scientific advances, but by the systems, operations, and local realities that determine whether patients can access timely, effective care.

    Drawing on her background in oncology consulting and her personal experience as a caregiver for her mother, Meagan shares why so many of the biggest challenges in cancer care are structural rather than scientific. The conversation dives into the crucial role of community oncology, the operational gaps that delay access to care, and how ACCC is working to bridge the gaps between innovation and practical, everyday solutions for both providers and patients. With most cancer care delivered in community settings, advocacy leaders will learn about ACCC’s “how to” approach that helps close the gap between breakthrough science and real patient access.

    In this episode, you’ll gain insights on:

    • Why access to care is often determined by where a patient lives
    • Non-clinical barriers to patient outcomes, including fragmented systems, administrative burden, and workforce shortages
    • The critical role community care settings play in delivering the majority of care in the U.S.
    • How collaboration across clinical centers, care teams, and advocacy organizations can reduce friction for patients and providers alike
    • How data and patient stories together can drive more effective advocacy and system change

    This episode is a timely reminder that improving patient care requires more than medical innovation alone. It takes practical solutions, stronger collaboration, and systems designed to help patients move through care with fewer delays and less burden. It also reveals how patient advocacy organizations can play a critical role in making this happen.

    続きを読む 一部表示
    38 分
  • Reading the Signals: How One Successful Organization Knew It Was Time to Change
    2026/03/31

    A highly respected patient advocacy organization with a trusted identity and decades of impact made a bold decision to change – the reasons behind this decision matter for every organization.

    For many advocacy leaders, brand identity is deeply tied to trust and recognition. But as science evolves and patients’ needs become more complex, organizations must ask themselves: are we reaching all the patients we’re meant to serve?

    In this episode of Patient Advocacy Voices, host Eric Racine is joined by Anders Kolb, President and CEO of Blood Cancer United, alongside returning co-host Elizabeth Franklin of Sanofi. Together, they explore one of the most difficult and necessary decisions an organization can make: transforming an already strong identity to better serve patients.

    What may look like a simple rebrand is, in reality, a story of leadership, courage, and a deep commitment to patients. Dr. Kolb shares both his professional journey as a pediatric oncologist and his personal connection to blood cancer. He reveals how data, listening, and lived experience uncovered a critical gap: too many patients did not see themselves reflected or served by the organization. This resulted in a strategic change from the Leukemia & Lymphoma Society to Blood Cancer United, a name and movement designed to be more inclusive, more representative, and expand access and support for everyone affected by blood cancer.

    In this episode, you’ll gain insights on:

    • How to recognize when your organization’s mission has outgrown its brand
    • How to make a bold, forward-looking decision by reading the right signals
    • Why inclusive language helps more patients feel seen, supported, and connected
    • How to tie culture, strategy, and success metrics around real patient impact
    • Ways to lead a large-scale organizational change

    This episode reveals how proactive leadership decisions can transform an organization to expand its impact, remove barriers, and ultimately connect more patients to the support they need when it matters most.

    続きを読む 一部表示
    31 分
  • Shaping the Future of AI: A Leadership Moment for Patient Advocacy
    2026/02/26

    How can patient advocacy leaders ensure that artificial intelligence truly serves the people it is meant to help?

    As AI rapidly reshapes the healthcare system, patient advocates have both an opportunity and responsibility to influence how these technologies are designed, governed, and implemented to transform patient health.

    In this episode of Patient Advocacy Voices, host Eric Racine welcomes back Randy Rutta, President and CEO of the National Health Council (NHC), alongside Fabrice Bocquillon, Global Head of Digital Patient Experience at Sanofi, for a timely conversation on AI, innovation, and patient-centered leadership. Together, they explore how AI is being applied across healthcare, from accelerating drug discovery to improving disease diagnosis and enhancing how patients navigate care and access support. They discuss what it will take to ensure patients are not just beneficiaries of AI innovation but also active partners in shaping it.

    In this episode, you’ll gain insights on:

    • Why patient groups must actively shape the future of AI in healthcare
    • Ways that AI can help reduce friction across the patient journey
    • What “responsible AI” means including fairness, transparency and accountability
    • How patient advocates can collaborate with tech innovators, policymakers, and other health system players to ensure AI is patient-informed from design to deployment
    • How NHC’s Patient Experience + Innovation Center (PXI) is creating new pathways for patient groups and technology innovators to work together

    This is a pivotal leadership moment for the patient advocacy community. This episode is a call for advocacy leaders to engage, ask critical questions, and help set the standards that ensure AI truly benefits patients while remaining ethical, transparent, and grounded in lived experiences.

    続きを読む 一部表示
    46 分
  • Rebuilding Trust: What the Autism Community Teaches Us About Vaccine Confidence
    2026/01/22

    How do we rebuild trust in vaccines when fear and misinformation stand in the way, especially for autistic individuals and their families?

    In this episode of Patient Advocacy Voices, host Eric Racine is joined by co-host Heather Entenmann, U.S. Public Health Engagement Lead at Sanofi, for a thoughtful conversation on vaccine confidence, trust, and inclusion. Together, they welcome two leading voices in public health and advocacy: Danielle Hall, former Vaccine Education Lead at the Autism Society of America, and Dr. Kelly Moore, President and CEO of Immunize.org.

    Drawing on lived experience, decades of public health leadership, and frontline advocacy work, the conversation explores why the long-debunked myth linking vaccines and autism continues to persist, and why rebuilding trust requires more than facts alone. The discussion highlights how healthcare experiences, sensory needs, anxiety, and empathy all play critical roles in shaping vaccine decisions, and what advocacy leaders and providers can do differently to better support autistic individuals and their families.

    In this episode, you’ll gain insights on:

    • Why misinformation about vaccines and autism endures, and how to address it with empathy, not judgment
    • How healthcare experiences and sensory needs influence vaccine confidence in the autism community
    • Practical ways providers and vaccination sites can reduce anxiety and create more inclusive, respectful experiences for immunizations in any disease area
    • How advocacy organizations, healthcare professionals, and trusted messengers can counter misinformation by leading with empathy and authenticity

    This conversation is a powerful reminder that rebuilding trust in public health starts with listening, understanding lived experiences, and meeting people where they are, because confidence is built not just through evidence, but also through empathy.

    続きを読む 一部表示
    39 分
  • A Year of Transformation: What Patient Advocates Taught Us About Evolving to Deliver More for Patients
    2025/12/11

    2025 was a year of transformative change and opportunity across the patient advocacy community, Sanofi, and for patients.

    In this special year-end episode, host Eric Racine, joined by Adam Gluck, Head of U.S. & Global Specialty Care Corporate Affairs, and all Sanofi Season 2 co-hosts, revisit the most powerful conversations and lessons from the 2025 season while exploring the year’s defining theme, transformation. We are living through an unprecedented moment where sweeping shifts in healthcare policy, groundbreaking AI capabilities, and breakthrough scientific advances are unfolding at the same time, creating both extraordinary opportunity and profound responsibility to ensure these developments truly improve patients’ lives.

    Eric and the team surface insights on how patient advocacy organizations and Sanofi are rising up to meet this incredible moment. Together they recall key lessons from advocacy leaders across immunology, lung health, vaccines, mental health, rare diseases, maternal health, and more. Learn how collaboration, co-creation, and patient integration can help organizations transform capabilities and deliver more impact for patients.

    In this episode, you’ll gain insights to:

    • Uncover transformation opportunities during this time of rapid shifts in healthcare, policy, technology, and science
    • Adapt new tools and engagement models to better meet the needs of patient communities
    • Scale community-centered programs creatively, from helplines to peer networks and proactive outreach
    • Strengthen collaborations across advocacy groups, policymakers, and industry to drive meaningful change
    • Accelerate the “last mile” between scientific breakthroughs and real-world patient access
    • Embrace continuous learning and mindset shifts that are essential for organizational transformation that delivers results

    As we close out the year, we’re grateful to every patient advocacy leader whose insights helped us renew our commitments and elevate our performance for patients moving forward into 2026. Looking ahead, the pace of change will only accelerate, but so will our collective ability to anticipate and respond, guided by the advocates who inspire and inform this work. We’re excited to build on this momentum next season with new conversations, fresh discoveries, and more lessons that move us closer to a healthcare system that truly works for every patient.

    続きを読む 一部表示
    52 分
  • The Sanofi Patient Community Promise: Moving Beyond Patient Centricity Talk to Real Actions for Patients, Feat. the Crohn’s & Colitis Foundation
    2025/11/24

    What does it take to move from patient-centric talk to patient-driven action?

    In this episode, we go inside Sanofi’s Patient Community Promise, a commitment to truly integrate patients throughout every part of its global organization.

    Host Eric Racine is joined by Sanofi co-hosts from around the world: Kersten Sharrock, Amy Akers-Teets, Catherine Coulouvrat, and Nick Taylor. They share how the Patient Community Promise was co-created with more than 80 patient advocacy leaders, how Sanofi is both measuring and publicly reporting the ways this promise is reshaping its culture, decision-making, and actions for patients. They are also joined by special guest Michael Osso, President & CEO of the Crohn’s & Colitis Foundation, who returns to the podcast to provide an external perspective on what true patient partnership looks like, and why it’s urgently needed as the healthcare landscape evolves.

    You’ll hear examples of integrating patients throughout every stage of the scientific innovation lifecycle, from R&D to patient access to people-centered healthcare systems. Across the conversation, the group reflects on the cultural transformation required to meaningfully share the table with patients, the power of real-world data, and how patient-informed insights can accelerate medical innovation for all patient communities.

    This episode is packed with insights on how to:

    • Co-create commitments with patient leaders that are actionable and transparent
    • Integrate patient engagement throughout your organization to drive ideas and decisions
    • Accelerate patient-driven innovation through real-world data, lived experience, and continuous listening
    • Strengthen partnerships with patient leaders and organizations to close gaps in research, access, and care
    • Simplify processes and make partnerships easier and more impactful
    • Sustain culture change by aligning behaviors, metrics, and accountability to what matters to patients

    This episode offers a rare, behind-the-scenes look at how bold commitments become lived behaviors, and why partnering differently with patients is essential for the future of healthcare.

    続きを読む 一部表示
    53 分