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

Active 4 days ago

Stange constellation of symptoms - anyone had a similar experience and found a diagnosis or effective treatment?

Hello, I've been struggling for years now with massive changes in my body, and I'm really worried for my health, as I...

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...

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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...

Wisdom Teeth Removal

Hi Everyone, I hope you are all doing ok. I am just looking for some guidance. My son is 21, has had...

Adrenal hormones

Hi, I'm 25 y.o. male. I have doubts that I'm producing too much adrenaline. I checked all my hromones from endocrine system...

Does anyone here have Mast Cell Activation Syndrome?

Trying to decipher if I should be avoiding My Trigger Foods altogether or if it's not The Top Couple of Ingredients I...

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...

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...

Leg movement

2 years ago I started to develop a disorder in both my legs. Can't move properly. I'm 55 Can't run at all...

Urgent Help Needed: Undiagnosed Condition in 8-Month-Old with Severe Symptoms

Hello everyone! I'm posting on behalf of a friend in China whose 8-month-old son has been battling severe, unexplained symptoms since he...

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