Forums

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

Active 3 days ago

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?...

Active 7 days ago

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...

Active 8 days ago

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...

I wish others knew that...

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

how have y'all been coping with fear, insomnia, due to being in remission?

I was diagnosed with nsclc and subsequently found out I have myasthenia gravis as well. The meds they give me for the...

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...

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