Patient Stories

An Unexpected Liver Transplant Part 4 – The Journey to Disney World

December 22, 2025

RFK’s Granddaughter, Tatiana Schlossberg, Reveals Diagnosis of Rare Blood Cancer

December 11, 2025

Brooke’s Battle Against CIDP, Neuropathy, and Nearly a Dozen Other Diagnoses

December 8, 2025

Jenna’s Journey with Neuroendocrine Tumors (NETs)

December 8, 2025

Danielle’s Story Living with Stage 3 MASH

November 19, 2025

Rare Disease Day: My hATTR Amyloidosis Story

November 19, 2025

Let’s Cheer Jenny on through the Last Lap of her Incredible Journey

November 18, 2025

Danny Gereg Shares His Bladder Cancer Story

November 12, 2025

CS ECHO: Salima’s Fight Against Cowden Syndrome

November 10, 2025

Nicole B.’s Journey with Crohn’s & Fibromyalgia

November 6, 2025

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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

An Unexpected Liver Transplant Part 4 – The Journey to Disney World

RFK’s Granddaughter, Tatiana Schlossberg, Reveals Diagnosis of Rare Blood Cancer

“The Part That Died”

Jenna’s Journey with Neuroendocrine Tumors (NETs)

Danielle’s Story Living with Stage 3 MASH

Rare Disease Day: My hATTR Amyloidosis Story

Let’s Cheer Jenny on through the Last Lap of her Incredible Journey

Danny Gereg Shares His Bladder Cancer Story

CS ECHO: Salima’s Fight Against Cowden Syndrome

The Things We Don’t Know

Nicole B.’s Journey with Crohn’s & Fibromyalgia

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