Patient Support Groups
· 47 min · S6 E107
Episode Patient Support Groups
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.
Autoinflammatory Alliance
Systemic Autoinflammatory Disease (SAID) Support
Autoinflammatory Alliance: Coparison Chart
Links in the notes 2
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