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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...

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...

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?...

DBS and previous blood clots

I have a complicated history of blood clots that put my scheduled dbs on hold for over 1.5 years. I'm now eligible...

Living With Adult-onset Still's Disease?

Has anyone been diagnosed with adult-onset Still's disease? What was your diagnosis experience like? How do you manage life with AOSD?...

Holidays with a Rare Disease

The holidays can be exciting but also come with many challenges for those with rare diseases. What special considerations do you have...

West Nile Virus

Long term walking difficulty. Walk very slowly with a cane....

SMS

Does anyone on here have Smith-Magenis syndrome or have family members with it?...

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