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

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...

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...

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...

Goosebumps with most emotions/passion, sneezing, yawning..

Since march of this year, every time I cried, goosebumps all over my left side of my body. Over the last few...

Invisible Illness

What aspects of your rare disease are invisible to others?...

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...

Unknown pain disease?

Looking for help with my condition. After seeing multiple Dr’s the past three years and the last being a neurologist. It’s a...

ALS

My 70 year old husband was diagnosed with ALS 1 month ago. He has dementia as well. He doesn't comprehend what's going...

Kidney Transplant/Primary Immune Deficiency

Hi all! Feeling rather alone. I had a kidney transplant because I have Compliment 3 Glomerulopathy. I also have Common Variable Immune...

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...

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