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

How can we support you?

What information do you hope to find on our site? Is there anything in the rare community as a whole you would like to see more of?...

Finding a specialist

I learned I not only have osteonecrosis in both my hips, but also my left knee. All due to high doses of steroid for a long period at a time...

SILENT STRUGGLES: UNDERSTANDING EATING DISORDERS"

Eating disorders is an acute and serious psychological health stipulation that is noticeable by deleterious eating manners, which can seriously and crucially impact physical health and spiritual or psychological or...

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 anyone have any suggestions on support groups, doctors...

Patient with strange symptoms

I have a patient who has severe pain in her ear that extends down to the inside of her mouth and causes burning and what seems like nerve pain. She...

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. Everything is fine. The problem is that in...

What do you guys think this is

I have a couple of things going on but I don’t have a diagnosis yet but wanted to see what you all think is going on. I have drop foot...

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 can eat it, or if it doesn't cause...

Antibiotics experience: Azithromycyn, Ethambutol and Refampin

A member is interested in feedback from the community from anyone who has taken any of the above antibiotics with some degree of success. Do you or someone you know...

Hypoglobulimia

Just wondering how many others have this, mine was med induced....

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