Patient Stories

The Silent Struggle – Mental Wellness in NF2 Surgery

May 22, 2026

Claudine’s Journey with Parkinson’s Disease

May 19, 2026

Fighting for Himself and Others: Wojciech’s Battle Against Crohn’s Disease and More

May 13, 2026

Dismissal, Derision, and Misdiagnosis: Olga’s Lupus Story

May 12, 2026

The Timeless Passages of My Mind and Soul

May 9, 2026

Listening to the Quiet Signs: A Twelve-Year Journey to Answers

May 5, 2026

Against All Odds: Madison’s Victory Against a Hepatic Adenoma

May 4, 2026

Health Benefits of Putting Feelings to Words

May 3, 2026

“I Am More Than the Person in the Bed” – Kristian’s Message to the World

May 2, 2026

“Not Defined By His Disability:” What Bennett Has Taught His Family About Spinal Muscular Atrophy

May 1, 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

Beyond Your Grip

Claudine’s Journey with Parkinson’s Disease

Connor’s Leukodystrophy Story