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

Featured

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 go to get support? What actually makes a...

Featured

What fills your cups on hard days?

Living with a rare disease or caring for someone who has one can be challenging. We want to know how you keep your own cup full while navigating difficult symptoms...

Active 5 days ago

Anyone Had a Rare Eye Condition First Spotted During a Routine Eye Exam?

I recently went in for a standard eye test, thinking I needed a new prescription, but the optician noticed something unusual. I was referred for further tests, and now the...

Active 5 days ago

CMT type 4c1, hEDS, PsA, Fibro, Ichthyosis

I wish Drs wouldn't laugh off multiple diseases. Even a dna test didn't help. " only thier clinical opinion matters, not a dna test. I paid for my own dna...

Active 7 days ago

Awake but trapped

I’m awake, fully aware that I cannot move. No idea how long it will last? Will I stop breathing? Nobody home for the dog to alert, so I lay here,letting...

Active 8 days ago

MSL2 syndrome

Hi everyone, at first sorry for my english I didn't write for a long time and I live now in Germany. Our 7 years old son has after cca 5...

Active 8 days ago

diagnosis

what are some tips with managing fap syndrome...

Active 8 days ago

Having a disease without a name

Greetings, I have what may be an autoinflammatory disorder vs an unlabeled rare condition that affects my barrier to inflammation. We found treatments that generally work and keep me off...

Active 8 days ago

Unknown Health conditions that is so discormforting

Hi, everyone I woke up one morning to notice that I have a burning sensation on one of my legs. I thought it was a slight stuff. Over time some...

Active 8 days ago

I wish others knew that...

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

Active 8 days ago

1 year later, no diagnosis

Mom looking for support...It's been a little over a year since all this started. 2 hospital stays each 1 week long. First both hospitals showed results positive for scleroderma, (and...

The Weight of Rare Disease

This giveaway has closed but we still welcome community members to share their perspectives. Living with a rare disease comes with challenges that many people may not fully understand. Beyond...

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