From Invisible to Empowered: Advocacy Strategies from PDSA to Drive Early Recognition, Patient Connections, and Innovation

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.