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

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That I can control my symptoms if I make an effort

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why do things aways have to be YOUR way?

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15 years no closer to answer's

Hi everyone, I'm just winging it and reaching out to the Internet today to ask if anyone knows anyone or any conditions...

Active today

Help with mysterious hand condition + gut condition

Hi, please I need your help. I am dealing with a mysterious condition in my hands (under the skin) that seems completely...

FeaturedActive 2 days ago

What is your go-to item or ritual for finding physical comfort during a flare-up or a hard health day?

Whether it’s a specific pillow, a favorite tea, a warm bath, or a cozy blanket, we want to know what brings you...

Active 4 days ago

Anti Myelin Associated Glycoprotein Antibodies

How to you cope with sensory attaxia? Do you have fatigue? What type of exercise helps keep muscles strong? What other symptoms...

Active 5 days ago

Invisible Illness

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

Active 6 days ago

I wish others knew that...

What is one thing you wish more people knew about living with a rare disease?...

Persistence in believing in yourself.

It has been a long ten years. Ten years feeling like they were stolen only to realize that they were actually wrapped...

How Do You Cope?

Does anyone have tips or things that help you cope with living with a rare disease? What do you do to manage...

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