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

Active yesterday

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...

Active yesterday

Don't Wait For An Emergency To Start Looking

Most people only think about ambulance numbers, nearby clinics, or emergency medicines after something's already gone wrong when panic makes it hardest...

Active 3 days ago

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...

Active 6 days ago

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...

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...

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...

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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