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

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...

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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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...

Anyone have any advice about CIP?(Congenital Insensitivity to Pain)

I am the caregiver of a person with CIP. As he gets older, the challenges he faces have become more concerning. Does...

Hundreds of thousands of dollars spent across multiple years and still not diagnosed.

My partner has been suffering from chronic nausea and vomiting for years at this point, every single common cause has been ruled...

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