Patient Stories

The Different Things That Help My Dystonia The Most – In A Nutshell

May 26, 2025

For Jaicion: A Mother’s Strength, A Son’s Light, All in the Face of SMA

May 22, 2025

Navigating a New Life with “The Trifecta” – POTS/MCAS/EDS

May 20, 2025

When They Were Told His Leukemia Had Spread, They Planned a Wedding to Celebrate His Life – PART 2

May 15, 2025

Lessons Learned as a 3rd-Generation Fabry Disease Patient

May 7, 2025

4 Years. 4 Neurologists. A Young Mom’s Journey to a Friedreich Ataxia Diagnosis

May 1, 2025

Brenda’s Divine Intervention: Primary Biliary Cholangitis

April 29, 2025

Lisa’s Journey with Primary Biliary Cholangitis (PBC)

April 25, 2025

Love, Diagnosis and Everything After: Our GRIN1 Journey

April 22, 2025

The Story of Rory – Life and Death with CTNNB1 Syndrome

April 18, 2025

Joy’s Story with Glanzmann Thrombasthenia

April 17, 2025

Halima’s Story with Mucous Membrane Pemphigoid

April 15, 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!

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