Skip to Accessibility Menu Skip to Login Skip to Content Skip to Footer

Forums

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? Let this be a place to ask questions...

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 well as the boys only research and studies...

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 symptoms kind of get "mixed up" with other...

Hypoglobulimia

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

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 rare diseases, we are fielding our first Rare...

Categories

Select a category to find topics that interest you.