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Read conversations, start a discussion, and connect with others about rare diseases.

Rare Disease Clinical Trials

Have you explored or participated in a clinical trial? What unique challenges do rare disease patients face when it comes to trials?...

VEXAS - In Honor of Max Gyllenskog Intro

VEXAS Syndrome: Spread the Word When Max Gyllenskog first began experiencing significant health issues, the puzzling array of symptoms left everyone baffled...

I have Myasthenia Gravis and Parkinsons

I would like to find someone else or a group that I can discuss my symptoms and problems with. Some of my...

Hypoglobulimia

Just wondering how many others have this, mine was med induced....

Is there anybody in the medical field that understands ultra rare duchenne muscular dystrophy of the phenotype sex inherited with skewed markers

I just want to let the world know that there is a cluster family all living females symptomatic with DMD symptomatic as...

How has living with a rare disease impacted you?

Those living with a rare disease are often the experts on their disease. To better understand the patient experience and realities of...

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