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

FeaturedActive yesterday

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 today

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...

Active 4 days ago

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...

Active 4 days ago

I wish others knew that...

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

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...

Invisible Illness

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

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...

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!!

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...

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