On Saturday, 28 June 2025, a group of inspiring adult patients living with VACTERL Association took to the stage at the VACTERL Association Support Group’s annual Get-Together in Birmingham, UK to share their journeys in a powerful presentation titled “Patient Empowerment: A Journey from Isolation to Advocacy.” Their talk, supported by ERN eUROGEN, is now available to watch on YouTube.
The presentation was delivered by Kate MacFarlane, Susie Bannister, and Shaun Shepherd—UK-based patient advocates who have become torchbearers for others living with VACTERL Association. Drawing on personal experiences of medical trauma, social isolation, and the long road to self-acceptance, the speakers highlighted how connection, community, and knowledge can transform lives.
The group described the emotional and practical challenges faced by people born with complex congenital conditions. They candidly shared what it’s like growing up with limited understanding—even among healthcare professionals—and how important it is to move from feeling “too complicated” and alone to becoming a partner in care and an expert by experience.
Their stories illustrated a common trajectory: from silence and stigma to advocacy and agency. By building meaningful connections with peers, joining support groups, and accessing networks like ERN eUROGEN, they were able to gain confidence, shape their healthcare journeys, and empower others to do the same. The presentation also acknowledged the vital role of parents and caregivers, who often face their own isolation and fears.
ERN eUROGEN has previously collaborated with this patient group to produce a flyer that captures the key themes emphasised in the presentation, which serves as a resource for others beginning their empowerment journey. Designed to be accessible and hopeful, the flyer encourages patients and their families to connect, learn, and advocate for themselves and one another.
As one speaker movingly put it, “We healed in stories—not the ones with neat endings, but the ones with raw edges… where we learned that scars were never signs of weakness, but instead, brave proof that we survived the storm.”
ERN eUROGEN is proud to support patient-led initiatives like this. Together, we continue to champion a model of care that values lived experience, fosters empowerment, and ensures that no one navigating life with a rare condition ever feels alone.
