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

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 for the surgery but at an extremely high...

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 to take into account during this time of...

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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