Patient Stories

My Insurance Covered My Treatment. I Still Couldn’t Get It.

August 14, 2026

First Patient in the World Treated With Gene Therapy for Cockayne Syndrome

August 12, 2026

Stephen’s Journey with Esophageal Cancer

August 11, 2026

From Breakdown to Breakthrough – Humberto’s Pemphigus Vulgaris Story

August 10, 2026

Porter’s Perspective | A SYNGAP1 Sibling

August 9, 2026

From Diagnosis to Purpose: Nick’s MS Journey

August 8, 2026

The Oversensitized Nervous System: Why Symptoms Fluctuate

August 7, 2026

Daniel’s CSF Shunt for Idiopathic Intracranial Hypertension

August 6, 2026

Raising Awareness of Christoph’s Rare Progressive Neurological Case

August 3, 2026

Teen Caregiver Finds New Purpose: Lilly’s Story

July 21, 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

My Insurance Covered My Treatment. I Still Couldn’t Get It.

First Patient in the World Treated With Gene Therapy for Cockayne Syndrome

Stephen’s Journey with Esophageal Cancer

From Breakdown to Breakthrough – Humberto’s Pemphigus Vulgaris Story

Porter’s Perspective | A SYNGAP1 Sibling

From Diagnosis to Purpose: Nick’s MS Journey

The Oversensitized Nervous System: Why Symptoms Fluctuate

Daniel’s CSF Shunt for Idiopathic Intracranial Hypertension

Raising Awareness of Christoph’s Rare Progressive Neurological Case

Where the Pain Used to Be

Cheryl’s Liver Cancer Story

Teen Caregiver Finds New Purpose: Lilly’s Story

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