Patient Stories

Think Beyond Remission to Protect the Life We Saved: A Young Man’s Journey with T-cell Acute Lymphoblastic Leukemia/Lymphoma

September 5, 2026

You Do Not Need to Be Healed to Be Held: Love and Chronic Illness

September 2, 2026

When Other People Doubt Your Body Long Enough, You Start Doing It for Them

August 28, 2026

Back on the Ice: Jim’s Journey with Advanced Lung Cancer

August 15, 2026

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

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

To Stand Beside Suffering

When the Silence Got Loud

Think Beyond Remission to Protect the Life We Saved: A Young Man’s Journey with T-cell Acute Lymphoblastic Leukemia/Lymphoma

You Do Not Need to Be Healed to Be Held: Love and Chronic Illness

When Other People Doubt Your Body Long Enough, You Start Doing It for Them

End Sepsis – Rory’s Story

Back on the Ice: Jim’s Journey with Advanced Lung Cancer

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

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