Patient Stories

Becoming the Patient: How Lung Cancer Changed My Life, My Purpose, and My Voice

October 11, 2026

Vanessa’s Acoustic Neuroma Story

October 9, 2026

How One XLH Diagnosis Sparked Conversations Across Three Generations

October 8, 2026

Body Bound by Earth, Mind Master of the Cosmos: My Journey with LGMD2R

October 7, 2026

Seen, Heard, and Believed: Why the Patient Voice Matters

October 6, 2026

Becky’s Journey with Metastatic Colon Cancer

October 6, 2026

I Live With LGMD. I Want Patients to Help Shape What Comes Next.

October 5, 2026

One Mom’s Fight to Change the Language Around Microvillus Inclusion Disease (MVID)

October 1, 2026

A Routine Colonoscopy at 44 Revealed Cancer – Now She’s Raising Awareness

September 27, 2026

Boundaries, Securities, and Safety: The Unexpected Challenges of Kevin’s PKU Advocacy

September 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

Becoming the Patient: How Lung Cancer Changed My Life, My Purpose, and My Voice

Vanessa’s Acoustic Neuroma Story

How One XLH Diagnosis Sparked Conversations Across Three Generations

Body Bound by Earth, Mind Master of the Cosmos: My Journey with LGMD2R

Seen, Heard, and Believed: Why the Patient Voice Matters

Becky’s Journey with Metastatic Colon Cancer

I Live With LGMD. I Want Patients to Help Shape What Comes Next.

The Weight of Thank You

Perpetually Healing

One Mom’s Fight to Change the Language Around Microvillus Inclusion Disease (MVID)

A Routine Colonoscopy at 44 Revealed Cancer – Now She’s Raising Awareness

Boundaries, Securities, and Safety: The Unexpected Challenges of Kevin’s PKU Advocacy

Let’s Work Together!

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