Virginia Maxwell, Co-Founder and Director of Patient Engagement and Advocacy for the PRP Foundation, knows what it means to live with a rare disease and to fight for the care her family deserves. Born with Pityriasis Rubra Pilaris (PRP), a skin condition that affects only about 6,000 people worldwide, Virginia has spent her entire life navigating misdiagnoses, hospitalizations, and a healthcare system unprepared to support patients with conditions like hers. Her three children also live with PRP, making her both a patient and a caregiver in this incredibly rare community.

DISCLAIMER: This podcast is for informational purposes only and should not be considered medical or health advice. This podcast does not substitute medical treatment. Always consult a doctor or dermatologist regarding medical advice, diagnoses, or treatment.

In this heartfelt conversation, Virginia Maxwell shares her journey from being a child in hospital beds and burn units to becoming a voice for patients on Capitol Hill. She describes the immense challenges that come with PRP – constant insurance denials, step therapy, and life-saving medications that can cost thousands of dollars per injection. She also recalls the heartbreaking moments of watching her children suffer, and the relief when new biologic therapies finally brought hope and healing.

Virginia talks about how her advocacy began out of necessity, but has grown into a mission. Today, she testifies before state and federal legislators, works with groups like the Bleeding Disorders Foundation and the Arthritis Foundation, and is building stronger networks for rare disease patients through the PRP Foundation. She emphasizes that advocacy is not just about one disease, it’s about ensuring access, affordability, and dignity for all patients navigating chronic illness.

This episode is both inspiring and eye-opening, offering listeners a rare glimpse into what it takes to fight for care when the system is stacked against you. Virginia’s story is a reminder that behind every policy debate are families simply trying to live healthy, productive lives.

This episode is produced by Skip The Boring Stuff, a podcast strategy company for business owners and creatives.