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

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...

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...

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...

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...

From Parkinson’s to Progressive Supranuclear Palsy

10/2020 diagnosed with one disease, 12/2023 P.S.P. I was told that this new disease diagnosis was so much worse. My fate was...

How do you convince a dr. to even LOOK under the hood. Not just at the chassis. I FELT demeaned!!

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