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.

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

• Amplify disease awareness through storytelling and creative outreach
• Overcome the challenge of educating healthcare providers about a misjudged disease
• Build connections that transform patient isolation into patient empowerment
• Contribute to the leading edge of innovation by generating patient data and bringing patients’ perspectives directly to the scientific community

Whether you work in a rare disease area or any underserved patient community, this conversation offers fresh ideas and practical approaches for expanding your organization’s reach and impact.

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 where they are, listen deeply, and create programs they’ll never forget. From launching a unique camp for inhibitor patients and families, to making learning fun through disco bingo trivia at conferences, CHES reimagines how advocacy organizations can educate and empower communities.

In this episode you’ll find practical insights on how to:

• Listen to what patients and families really need and turn it into creative, data-driven programs
• Design experiential education that is memorable and measurable
• Deliver impact for populations that lack solutions – learning from CHES solutions for children with inhibiters, women and girls with bleeding disorders, and people with ultra rare bleeding disorders
• Continually improve by acting on program data and community feedback

This episode is a powerful look at what happens when education and support is designed not just for patients but with them, offering relevant takeaways for leaders working in any therapeutic area.

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:

• The importance of screening and tools used by MHA for early identification of mental health concerns
• Ways to reduce stigma and create a culture that promotes trust, authenticity, and wellbeing
• What employees expect and how it leads to a safer and more productive workplace
• Examples of how leaders can role model mental wellness

This episode is a must-listen for anyone ready to rethink ways to advance mental health and wellbeing, whether you're leading an organization, managing a team, serving a community, or advocating for better health policies.

Content Warning: This episode includes discussions of sensitive mental health topics. Listener discretion is advised.

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:

• The "last mile" problem in getting therapies to patients
• Real-world examples of how insurance hurdles delay or deny care
• Policy shifts that could better reward innovation while reducing patient burden
• The urgent need for representative clinical trial recruitment
• How collaboration across advocacy, industry, and government can drive change

This episode offers both a frank view of patient access challenges and a clear call to action for working together, boldly and specifically, to make the system work better for patients.

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 evidence-based initiatives, this conversation highlights how cross-sector collaboration can accelerate correct diagnosis and treatment and create lasting change in rare disease communities.

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).

Tune in to hear the discussion, where the panelists shared insights around the biggest risks and opportunities for patient access and affordability in the current shifting policy landscape. They also emphasized the importance of collaboration between all stakeholders across the healthcare sector to drive truly meaningful changes for patients.

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 they dive into the innovative programs that have defined the American Lung Association's success. Discover how the American Lung Association HelpLine, which began as a statewide service in Illinois 25 years ago, has become a lifeline for patients nationwide. Learn how the American Lung Association adapts to meet the evolving needs of its community through digital platforms, personalized support services, and bold advocacy for cleaner air.

Don’t miss this episode packed with actionable lessons on driving scalable, long-term success in patient advocacy. Tune in to uncover Harold’s blueprint for building meaningful partnerships and empowering patient communities like never before!

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 patient-centered policies. You’ll hear how advocacy groups are generating evidence on patient value, bringing the lived experiences of patients into R&D, charting strategic paths to grow their organizations, and measuring and communicating outcomes. Adam Gluck, Sanofi’s Senior Vice President of US and Global Specialty Care Corporate Affairs, joins to provide unique perspectives on the US health policy landscape and the critical role of patients’ voices.

It's a great way to learn about the many ways US patient advocacy organizations are making a difference for patients, science, and policy. After listening, you’ll be ready for more incredible stories and inspiration from Patient Advocacy Voices in Season 2.