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

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. I went to ER. UTI and stomach pain...

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 wear on me, especially because I'm big on...

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 support never Complained again . Continuing symptoms terrible...

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 life....

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 from North Carolina at least every three months...

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?...

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 ...

Feeling isolated and alone with a severe rare disease

My husband and I have tried to do many things to support our daughter diagnosed with metachromatic leukodystrophy, rare terminal brain disease 3.5 years ago. Since she has become very...

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 of fact i am using whats left of...

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