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

undiagnosed with normal blood work

These are my symptoms and I just wonder if anyone else has the same thing and has been diagnosed with something where medicine or therapy has helped. My symptoms are...

Workplace Experiences

Has your rare disease impacted you in the workplace? What kind of experiences (positive or negative) have you had with disclosing to managers or coworkers?...

Madelung's

I am helping a friend in Gulf Breeze, Florida (next to Pensacola) who is suffering from benign symmetric lipomatosis (Madelung’s disease) He does not use the internet. His neck and...

Red rash in my mounth

I have red "rash" or something in her mounth for more then 2 months. What do you think this is?...

Hypoglobulimia

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

Addison's Disease

Most people have never heard of Addison's Disease or know what adrenal glands are and what they do. I have a little information about it, but not much. I was...

West Nile Virus

Long term walking difficulty. Walk very slowly with a cane....

CIDP (Chronic Inflammatory Demyelinating Polyneuritis)

I was an RN but didn't know about this disease. I would love to hear from people who have it, what kind of treatment they get, a little pathophysiology, and...

SMS

Does anyone on here have Smith-Magenis syndrome or have family members with it?...

How has living with a rare disease impacted you?

Those living with a rare disease are often the experts on their disease. To better understand the patient experience and realities of rare diseases, we are fielding our first Rare...

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