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

FeaturedActive today

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

Invisible Illness

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

Active 2 days ago

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...

Active 3 days ago

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...

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Active 4 days ago

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...

Unexplained 2 week fever multiple times

Started in 2022 and just finishing the 5th time. I live in upstate NY 6 months and west central Florida the other...

I wish others knew that...

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

Trying to make complex care feel less overwhelming

Trying to make complex care feel less overwhelmingI keep thinking about something I’ve seen over and over in complex care: the care...

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