Patient Support Groups
Update: 2025-08-12
Description
In this episode, we're joined by Karen Durrant, founder of the Autoinflammatory Alliance, who shares her powerful journey from a determined parent seeking a diagnosis for her child to the leader of a global patient advocacy movement. What began as a personal quest has evolved into an international network supporting thousands affected by autoinflammatory diseases. Karen discusses how her collaboration with Dr. Fatma Dedeoglu, a leading pediatric rheumatologist, helped bridge the gap between patient experience and medical research—ultimately contributing to the development of international clinical guidelines that are transforming care for rare disease patients worldwide.
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