Patient Stories

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

Turning Pain into Purpose: Our Story

July 1, 2025

Beyond Reason

June 26, 2025

Dancing Through the Rain with Cancer

June 25, 2025

Sebastien Recalls His Mother’s Breast Cancer Journey – Part 3

June 24, 2025

The Strength of a Single Mother: Dominique’s Breast Cancer Story

June 20, 2025

Sebastien Recalls His Mother’s Breast Cancer Journey – Part 2

June 17, 2025

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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.

Our goals are to share stories, cultivate strong community, provide the latest medical findings, connect people and pioneer production of patient worthy information. Help us attain these goals by telling us a little bit about yourself!

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