Patient Advocacy Voices

What happens when scientific progress outpaces patients’ real-world experiences? For people living with rare diseases, scientific innovation alone doesn't guarantee access to care. The journey from diagnosis to treatment can be filled with obstacles, and patient advocacy organizations play a critical role in closing these gaps.

In this episode, host Eric Racine and co-host Allie Boutin of Sanofi have an insightful conversation with Aviva Rosenberg, CEO and Co-Founder of the Gaucher Community Alliance. They explore what patient advocates can do to address barriers to diagnosis, treatment access, and care. As someone living with Gaucher disease, the mother of...

Transplantation can save lives. So why do patients who could benefit still face so many barriers to receiving one?

The science and clinical capabilities of transplantation have advanced dramatically, yet the patient journey remains extraordinarily complex. From understanding transplant options and getting referred to the right center to navigating insurance, organ availability, policy changes, and a complicated healthcare system, patients can encounter friction at nearly every step. Underlying many of these challenges is something even more fundamental: trust.

In this episode, host Eric Racine, PharmD, and co-host Kemi Osundina-Mkhize, PharmD, of Sanofi are joined by...

What can decades of successful vaccine advocacy teach every patient organization?  

Effective advocacy goes beyond raising awareness. It builds trust, removes barriers, collaborates with many partners, and empowers patients to make informed decisions. 

In this episode, host Eric Racine and co-host Courtney Fahey of Sanofi are joined by Amy Pisani, CEO of Vaccinate Your Family. Drawing from more than 30 years of leadership in vaccine advocacy, Amy shares lessons on how to combine scientific evidence with personal stories, work with trusted messengers, equip community partners with practical resources, and continually adapt as the information and public he...

Who gets to define value in healthcare? Although policymakers, payers, and healthcare professionals all play a role, patient advocacy leaders know that value must also be defined by the experiences of patients and the clinicians who care for them. In this episode of Patient Advocacy Voices, we explore how advocacy organizations can help ensure healthcare policies are shaped by the people most affected, and why proactively engaging patients is essential to protecting access to care.

Host Eric Racine is joined by co-host Kate Tighe for a conversation with Derek Flowers, Executive Director of the Value of Care...

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 inf...

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...

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, ef...

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...

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...

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...

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 dev...

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 als...

How does an advocacy organization with a historic legacy transform and lead on the most pressing issues facing its constituents today? 

Host Eric Racine and co-host Robin Johnson sit down with Cindy Rahman, President & CEO, and Erin Jones, Senior Director Legislative & Strategic Counsel, at March of Dimes. From its historic role in eradicating polio to its modern fight for the health of all moms and babies, March of Dimes evolves by mobilizing data, storytelling, and collaboration to drive meaningful change in maternal and infant care.

In this episode you’ll gain insights on how to:

When patients are living with a misunderstood condition, and healthcare providers may not always have the answers, advocacy organizations have the power to step in and help close the gaps. In this episode, host Eric Racine and co-host Elizabeth Franklin sit down with Caroline Kruse, President & CEO of the Platelet Disorder Support Association (PDSA), whose personal experience with ITP, a rare autoimmune disease, profoundly shapes how she leads. From helping patients and clinicians recognize ITP sooner, to connecting patients, engaging in R&D, and advocating for patient-focused policies, PDSA is powered by a team of people with lived experience.  

Successful patient advocacy groups often start with a simple but powerful question: What do our patients need that no one else is delivering? The CHES Foundation took this approach head on, turning gaps in care, education, and belonging into innovative, measurable programs for the rare bleeding disorders community.

In this episode, host Eric Racine and co-host Jane Smith sit down with Janet Brewer, Co-Founder & Executive Director of the CHES Foundation, to explore how CHES builds solutions that address true unmet needs of patients and caregivers. Janet shares how her personal journey shaped an approach to meet people...

In this episode of Patient Advocacy Voices, host Eric Racine and co-host Marco DeThomasis, People Business Partner, Specialty Care at Sanofi, sit down with Schroeder Stribling, President & CEO of Mental Health America (MHA). Together, they explore how data, early intervention, and workplace culture can help address America’s growing mental health crisis.

From national trends to practical tools, this conversation blends strategy with humanity – offering advocacy and business leaders insights they can apply to help improve mental health in their organizations and communities.

Listeners will gain valuable insights on:

Why do life-changing medical innovations often struggle to reach the patients who need them most? In this episode of Patient Advocacy Voices, Esther Krofah of the Milken Institute moderates a powerful conversation with senior Sanofi leaders across immunology, vaccines, diabetes, and policy on the systemic barriers that stand between scientific breakthroughs and ensuring access for patients in need. The conversation was recorded in February 2025 at the Sanofi Patient Advocacy Council.

You’ll hear candid insights on:

How do you drive awareness for a rare disease with a name that’s difficult to even pronounce and a wide range of symptoms that mimic other conditions?

In this episode, host Eric Racine and co-host Preeya George-Guiser sit down with Mary Jo Strobel, Executive Director of the American Partnership for Eosinophilic Disorders (APFED), about the organization’s strategic approach to rare disease advocacy.

Mary Jo shares how APFED blends creativity, strategy, and a patient-centered approach to raise awareness and improve lives for patients living with eosinophil-associated diseases. 

From creative targeted awareness campaigns to ev...

How will the shifting U.S. healthcare policy landscape impact patients? It’s an important topic that many patient advocates are thinking about today.

This month’s special episode features a thought-provoking panel discussion recorded during the Sanofi Patient Advocacy Council meeting in Washington, D.C., where panelists dove into this topic. Adam Gluck, SVP and Head, U.S. and Specialty Care Corporate Affairs at Sanofi moderated the panel, which featured Randy Rutta, CEO of the National Health Council (NHC) and Matt Eyles, former President and CEO of America's Health Insurance Plans (AHIP).

Get ready for an inspiring conversation about the power of passion, purpose, and partnerships in evolving patient advocacy to meet the changing needs of a community! In this episode, Harold Wimmer, President and CEO of the American Lung Association, shares insights from his incredible 46-year journey with the organization. Harold reveals how the American Lung Association grew successful regional initiatives into powerful, national programs that deliver critical resources and support to lung patients across the country. 

Join host Eric Racine and co-host Lisa Schmitt, US Public Affairs and Patient Advocacy Lead for Immunology at Sanofi, as...

Patient Advocacy Voices is dedicated to helping US advocacy groups strengthen capabilities in service to patients and their mission. Season 2 continues and will provide deeper insights and more pragmatic tips from patient advocacy leaders and visionaries. 

In this special episode to start the new season, host Eric Racine is joined by all his Sanofi co-hosts from Season 1 to recall the powerful stories and lessons learned from advocacy leader guests. Insights are recapped on vital topics such as ways to build trust and empower patients in local communities to act for better health, and how to collaborate on p...

With more than 100 years of experience, the National Health Council knows how to bring patient advocacy groups and other organizations together to advocate for patients’ interests. How do they stay at the forefront of a patient-focused US healthcare system? They innovate and collaborate.  

In this episode, Sanofi host Eric Racine and cohost, Demi Anastasiades, lead of US Public Affairs and Patient Advocacy for Immunology at Sanofi, are joined by Randy Rutta, CEO of the National Health Council. You’ll hear about NHC Connect, a dynamic resource hub for the patient advocacy community to share insights and co...

When it comes to meeting healthcare’s biggest challenges, sometimes the best approach begins with curiosity. Dr. Jean Wright, MD, MPH, Chief Executive Officer of the Chronic Obstructive Pulmonary Disease (COPD) Foundation, has made an immense impact on the COPD community and knows firsthand how to bring new solutions that move the needle for poorly understood patient communities. 

In this episode, Sanofi host Eric Racine is joined by Kate Tighe, Head of US Public Affairs and Patient Advocacy, Immunology at Sanofi, to discuss with Dr. Wright how shifting perspectives and sparking innovation can change outcomes for...

From leveraging existing resources to filling gaps with innovative tools, partnerships throughout the healthcare industry can help meet the needs of more patients and drive impact in an accelerated way. 

In this episode, Eric Racine is joined by Vicky DiBiaso, Global Head of Patient Informed Development and Health Value Translation at Sanofi, and Sara Loud from the Accelerated Cure Project, to discuss the transformative efforts of the Patient Advocacy Leaders in Drug Development Industry Network, also known as Paladin. Paladin is driving collaboration across biopharmaceutical companies and patient advocacy groups to help advance the development of life-saving t...

David Panzirer, a trustee of the Helmsley Charitable Trust, discovered his calling when his daughter was diagnosed with type 1 diabetes (T1D). A businessperson at his core, David views healthcare grants as investments, and his team continuously develops a deep understanding of the ecosystem as a key success factor to maximize their impact. Learn from one of the most significant players in the field of venture philanthropy, his team’s portfolio approach to healthcare investments, and their singular focus to improve people’s lives living with disease. Sanofi host Eric Racine and co-host Andrew Vilcinskas – a T1D patient himsel...

To help make an impact for patients, it's important to have a comprehensive understanding of how a disease impacts their day-to-day lives. Michael Osso, Chief Executive Officer of the Crohn's & Colitis Foundation knows this well. He and his team created a comprehensive research ecosystem that harnesses data– from reported anecdotes to clinical data, biosamples and more – to help researchers, patients, advocates and care teams get a holistic view of inflammatory bowel diseases (IBD) and drive advancements in the space. 

Sanofi host, Eric Racine and co-host Michael George discuss with him the importance of taking on such a large...

Patient advocacy groups have become a powerful force engaging with clinical researchers. The National Bleeding Disorders Foundation (NBDF) has been one of the best at driving a research agenda that matters to patients, yet they still saw areas for improvement. Maria Santaella, Vice President of Research Strategy at NBDF, realized the importance of including patient voices at the very start of and throughout the research process. This is what it takes to ensure researchers understand the unmet needs and complications people live with every day. Learn how NBDF evolved from supporting researchers to ensuring that the lived experience of...

What does it take to grow a patient advocacy group from the ground up to become a driving force for patients in the US? Learn how Julie Block, President and CEO of the National Eczema Association (NEA), defined a bold long-term vision and learned to trust her team to stay true to the plan. Defining a five-year strategic blueprint, NEA took a broad view of stakeholders throughout the healthcare ecosystem, enabling them to set bold goals for what could be achieved through partnerships. Julie’s personal growth as a leader blends humility with fearlessness. In this episode, Sanofi host Er...

What does it take to improve access to specialty care for vulnerable and underserved populations? What if the starting point is a complete lack of specialty care services? When Kim Thiboldeaux, CEO of the Northeast Business Group on Health, was told there was no cancer or specialty care on Native American reservations, her first reaction was shock, then it quickly turned to advocacy and action. After years of hard work and perseverance, the first cancer center on native land was opened on the Navajo Nation, whose more than 40K members comprise the largest federally recognized tribe in the United...

Cancer can be an isolating condition, so Meredith Cowden has made it her mission to ensure other patients are not alone. Meredith, a cancer survivor living with chronic graft versus host disease (cGVHD), responded to adversity by forming the Meredith A. Cowden Foundation with her family to support and advocate for fellow transplant patients. The key to Meredith’s success is her ability to advocate and form a successful alliance of advocacy groups that strengthens their ability to help and advocate for the cGVHD community. In this episode, Sanofi host Eric Racine and co-host Angie Bricco discuss with Meredith th...

Impact is a word we often use in patient advocacy. We know it’s important to the patients and communities being served, and that it also matters to the funders of advocacy programs. But how do you capture impact, when do you start, where does the information come from, and how should it be communicated? Sanofi host Eric Racine and co-host Elizabeth Franklin discuss this with our guest, Aicha Diallo, patient advocacy leader and senior director of programs at the Patient Empowerment Network (PEN), shares a methodology for capturing and communicating the impact of advocacy programs. Learn how PEN li...

Building trust and improving health in underserved communities can be a daunting challenge. Most would agree that “it takes a village,” but how do you create that village, and who are the right partners? In this premier episode of “Patient Advocacy Voices,” Sanofi host Eric Racine and his co-host Courtney Peters discuss this challenge with Dr. Laura Lee Hall, a patient advocacy leader and President Emeritus of the National Minority Quality Forum (NMQF) Center for Sustainable Health Care Quality and Equity. Dr. Hall saw disparities in influenza immunization rates in communities of color and decided to do something about it. In t...