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Rare Stories

Explore the extraordinary stories within 'RareStories'—a collection of heartfelt interviews with patient, parent, and doctor advocates. Gain profound insights into the challenges, triumphs, and unwavering resilience of those dedicated to raising awareness and making a difference in the world of rare diseases. Join us in amplifying these voices, fostering understanding, and building a compassionate community.

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Dive into an inspiring conversation with Daniel Kinchlea, accomplished author of 'The First Fire Dragon,' a rare autoinflammatory disease advocate, and a captivating inspirational speaker. Discover the stories behind his compelling book, gain insights into his advocacy work, and be motivated by the resilience that fuels his creativity.



Patient Voice spoke with Reine Hodroj about the role that patient organizations can play in helping to combat the isolation of living with a rare inflammatory condition like Behçet’s.


Photo and Blog by Patient Voice

Interested in Sharing your Story? 
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