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

Congenital short pedicles on MRI after a 2019 injury — anyone else dealing with this?

Back in 2019, I had an accident at work where I was sideswiped by two pregnant sows. When I got my MRI...

How to Be a Great Friend to Someone Living With a Rare Disease

What characteristics, behaviors, and kindnesses mean the most to you from people who are not living with a rare disease?...

Working with disease

I’m starting a new job today. It’s a remote, part-time position that pays well, but it doesn’t offer any benefits. I have...

What's wrong with my hand?

Too many needle pricks while my time in the hospital, now my hands look so different. Does anyone else face the same...

Living With Adult-onset Still's Disease?

Has anyone been diagnosed with adult-onset Still's disease? What was your diagnosis experience like? How do you manage life with AOSD?...

How do you find a doctor who will actually look at your whole medical history?

One of the things I keep hearing from people living with complex or rare conditions is how difficult it can be to...

Biggest challenges you face in your current journey?

Hi- I'm just curious about how people navigate this journey well. What are your biggest challanges and support needs? Where do people...

Medical mystery (6+ years)

I am at a loss. This has been an ongoing and progressively worsening problem for approximately six years, and it has affected...

The lines on the iris of the eyes are irregular.

Hello, everyone. I'm a new member who just joined recently. I have obvious dry eye syndrome. I often have a foreign body...

Navigating Exercise with a Rare Disease: What works for you?

Living with a rare disease often means standard fitness advice just doesn't apply to you. We'd love to start a conversation about...

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