Patient Stories

Ron’s Fight Against Amyloidosis

April 3, 2026

The Sun Sucks, But You Do Not

April 2, 2026

Rachel’s DVT and Pulmonary Embolism Experience

April 2, 2026

Finding My Way Forward: Living with Multiple Myeloma

March 31, 2026

Choosing to Be Me: Redefining My Life with Rheumatic Heart Disease

March 30, 2026

Heather and Nathan’s Journey with Huntington’s Disease

March 28, 2026

My Journey with Ehlers-Danlos Syndrome

March 27, 2026

Faye’s Journey with Amyloidosis

March 27, 2026

A Small Taste of Freedom in an Unfree World

March 21, 2026

My Journey, My Life, My Story, My Book – Carry’s Experiences with “Fish Odor Syndrome”

March 18, 2026

Skipping A Colonoscopy Almost Cost Me Everything

March 17, 2026

“At 44, I Thought I Was Starting Over” – Kristian’s Bladder Cancer Story

March 2, 2026

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!

PATIENT STORIES

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