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.