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

Experimental treatments

I have TOS (thoracic outlet syndrome). Unfortunately, the ONLY treatment that I have gotten any relief from my symptoms with is dry...

Road to NMOSD

In 2009 I began having more symptoms of blurred vision, double vision, back pain, leg pain Iretractable vomiting, nausea, hiccuping,walking became impaired...

help: Persistent Sensation of Heaviness from Clothing on Chest! – ruining my life!

I'm a 19-year-old who’s been dealing with a frustrating issue since I was around 8 years old, and it's really starting to...

Long time to diagnosis

I had symptoms with Bechets when I was 10 yrs old hospitalized with terrible mouth sores and pain. From abused home. No...

Welcome! Let's Get to Know Each Other.

We are glad you are here! Please introduce yourself and let us know which rare disease impacts your or your loved one's...

Coping with books

I fill up my cup by reading. I love science fiction specifically, because it tells us about building the future...

Rare Blood Cancer: Waldemstroms Macglobanemia

Living with a rare blood cancer is challenging. On a BTK Inhibitor has to be careful of side effects. Trips to Boston...

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...

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...

Extremely rare and ambiguous medical case.

Greetings everyone, i hope you are all doing well. Time and energy are a luxury that unfortunately i can’t afford anymore matter...

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