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

Mast Cells trigger my self

anyone else have Mast cell and histamine problems? hot and cold intolerance?...

The Weight of Rare Disease

This giveaway has closed but we still welcome community members to share their perspectives. Living with a rare disease comes with challenges that many people may not fully understand. Beyond...

Animal Companions

Do you have a pet that has helped you cope with life with a rare disease? Tell us about them and/or share a pic!...

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...

Leg movement

2 years ago I started to develop a disorder in both my legs. Can't move properly. I'm 55 Can't run at all, trip up stairs n more things than I...

undiagnosed disease

I don't know what's going on but I'm dying...

Rare Diagnosis Experiences

How long did it take you to get diagnosed with your rare disease? Did you receive any misdiagnoses?...

Will you take our In America survey and help others understand the true impact of rare diseases?

The In America survey is now closed. To better understand the patient experience and realities of living with a rare disease, we are fielding our Rare Disease In America survey...

Dealing w more than one

Hi, I'm happy to have run across this email, community forum. I currently suffer with HS & also Hydrocephalus. These are two rare diseases. How did I get both... Guess...

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