Rare Disease


Access to Care Disease Rare Disease DMD Duchenne Muscular Dystrophy ICER

Duchenne, Billy and the Fight for Access

Billy Ellsworth is 18. He just graduated from high school,...
Rare Disease Gastroparesis

Rare Disease Patients, You Must Make Yourselves...

I’m a rare disease patient. Over the years,...
Rare Disease

3 Cases of Rare Diseases Mistaken for Other...

Rare conditions are often misdiagnosed as other health...
Rare Disease ICER

ICER says rare disease patients are too...

The Headline: ICER Rare Disease report justifies cutting...
Patient Story Rare Disease

Patient Courage: Someday, I’m not going to be...

In New York City, you need focus. You need to navigate...
Access to Care Patient Story Rare Disease Stiff Person Syndrome

Stiff Person Syndrome: Living with a rare...

For ten years, I’ve been very sick with an extremely...
Rare Disease Ehlers-Danlos Syndrome Hypoparathyroidism

Rare Disease: The Challenges and Hopes of Living...

Patients Living with a Rare Disease Face Unique Challenges...
Patient Story Rare Disease

Genetic Growth Issue: Medical innovation...

The famed rabbit of the tale Alice in Wonderland, egged on...
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