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

Transitioning From Pediatric to Adult Care

Does anyone have experience with transitioning from a pediatric healthcare team to and adult care team? Do you have any tips for others navigating this, either as a patient or...

Blood Test

Had a Parathyroid Test today. Came back high. Should I be worried?...

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...

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...

Hypoglobulimia

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

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?...

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?...

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...

Doctor just said I have some random virus but am wondering if it is true or not.

So i went to the doctor today and they said I just have some random virus but do not know if it is true. symptoms: Body aches, Fever 101-102.3 it...

seronegative gMG treatment beyond IVIG and/or Apheresis

IVIG was a fail for me (tried more than one product) and am currently receiving Apherisis every 3 weeks via an AV Graft in my arm. Doctors predict this will...

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