This live episode features longtime friend and rare disease advocate Ben Forred. After years as a scientist studying rare conditions and leading a global patient registry, Ben launched Zebra Site Studios to design websites tailored specifically for rare disease organizations. In this conversation, Kyle, Sean, and Ben dig into the unique challenges of advocacy websites—balancing accessibility, multiple stakeholder needs, compliance, fundraising, and SEO. With his deep personal and professional experience in rare disease, Ben explains how he helps groups turn their online presence into a powerful, stress-free tool for connection and advocacy.

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