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

How to find a doctor that cares and is willing to dig deeper

Hi RD friends! My daughter has some type of sero-negative auto-immune condition, and has had it since she was 12 (she's 32...

Help Cure compass

I have a daughter with nf1 and didnt get info or updates on treatments so i developed a web site to get...

cerebellar ataxia

Dealing with the many symptoms of ataxia. Has anyone else dealt with this?...

why do things aways have to be YOUR way?

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...

Featured

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...

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...

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...

Mucosal melanoma

I'm not sure if I belong in this group since my oral mucosal melanoma surgery successfully removed the cancer with large and...

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