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

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...

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...

Learning to cope w/all my medical issues

I'm new on here, hoping to have some people to chat with. I have 4pups that keep me company everyday. Hugs +snuggling...

My symptoms are random and cannot be detected by EMT or any fancy machine so I’m accused of faking.

my life with Polymyositis

About 7 years ago (I was 77 then) I began noticing body weakness, first, gentle, then more acute. I needed a cushion...

Unknown Illness - Side pain & Snycope

For the past few years I have seen multiple specialists and had many tests. Physical - Female, white, 32yo, 200 lbs. Historical...

Dermatomyositis

I don’t know anybody else who has dermatomyositis. It is hard wearing all the stuff I need to in order to keep...

What life lessons or advice is important to pass on to children and young adults living with a rare disease?

What can parents and caregivers do to help set their children up for success as they grow up? What has been helpful...

Pola1 gene variation

Hello, I would like to connect with a family who has a child with POLA 1 gene variation, specifically Van Esch-O'Driscoll Syndrome...

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