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PATIENT STORIES

Cathy the Lupus and ITP Warrior

September 16, 2025

Cancer: It Sucks at Any Age

September 12, 2025

The Gift of Anticipatory Guidance: What Every Family Deserves

September 10, 2025

Fighting for Dom: A Mother’s Journey Through Rare Disease

September 3, 2025

From Ballet Studios to Research Clinics: Page’s Journey with Narcolepsy

August 29, 2025

Urban’s Life with SATB2-Associated Syndrome

August 28, 2025

Breaking the Cycle: A Family’s Journey Through Polycystic Kidney Disease

August 5, 2025

Living Through the Unexpected: My Ongoing Journey with Cervical Cancer

July 30, 2025

An interview with Johnny’s Mom: A Dravet Syndrome Family Life

July 28, 2025

Living with Familial Chylomicronemia Syndrome

July 25, 2025

Alyssa’s Story with Generalized Pustular Psoriasis

July 24, 2025

From Pharma Rep to Patient Advocate: My Journey with Neuroendocrine Cancer

July 11, 2025
CLICK HERE TO SHARE YOUR STORY!
We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor, we help patients, caregivers and support persons by providing relevant and often inspirational news and stories.
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