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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 well as the boys only research and studies...

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...

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 are the best! I'm dealing w/6 autoimmune diseases...

Recently been diagnosed

With dermatomyositis, unfortunately I've been suffering now from it for almost 4 years. I have athrophy my thinking space isn't what it was and the biggest challenge has been getting...

Invisible Illness

What aspects of your rare disease are invisible to others?...

How to Be a Great Friend to Someone Living With a Rare Disease

What characteristics, behaviors, and kindnesses mean the most to you from people who are not living with a rare disease?...

Sheehans

Does anyone have this besides me?...

Coping

I'm newly diagnosed and my steroids We're reduced to soon which caused a flare up. Been advised to up steroids which I have . I'm still have bad pain ...

How can we support you?

What information do you hope to find on our site? Is there anything in the rare community as a whole you would like to see more of?...

What is the most annoying unsolicited advice you've heard?

What annoying or unhelpful suggestions are you most tired of receiving (unsolicited!) from other people?...

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