Patient Stories

Teen Caregiver Finds New Purpose: Lilly’s Story

July 21, 2026

Megan’s Myasthenia Gravis Story: From Uncertainty to Advocacy

July 16, 2026

An Interview with Allyson, a Congenital Adrenal Hyperplasia Patient

July 11, 2026

When Your Brain Won’t Quiet Down: A Look at Dystonia and Anxiety

June 30, 2026

Les’ Journey with Cardiomyopathy

June 26, 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

Cheryl’s Liver Cancer Story

Teen Caregiver Finds New Purpose: Lilly’s Story

Some Dialysis Humor, Part 3

Joan’s Journey with MDD

Megan’s Myasthenia Gravis Story: From Uncertainty to Advocacy

Some Dialysis Humor, Part 2

Some Dialysis Humor, Part 1

An Interview with Allyson, a Congenital Adrenal Hyperplasia Patient

Refuse to Disappear

“I Won’t Let This Define Me.”

When Your Brain Won’t Quiet Down: A Look at Dystonia and Anxiety

Les’ Journey with Cardiomyopathy

Let’s Work Together!

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