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

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...

Living with Mast Cell Activation

62 years young and finally finding myself... Who would I have been if I was not sick for 62 years??? Now I am finding out and finally knowing these words...

Will you take our In America survey and help others understand the true impact of rare diseases?

The In America survey is now closed. To better understand the patient experience and realities of living with a rare disease, we are fielding our Rare Disease In America survey...

Blood Test

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

Living With Adult-onset Still's Disease?

Has anyone been diagnosed with adult-onset Still's disease? What was your diagnosis experience like? How do you manage life with AOSD?...

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...

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...

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 Deficiency. The balance of that disease with my...

Rare Disease in Children

Were you diagnosed in childhood? How did having a rare disease shape you? If you are a caregiver, share about your little warrior!...

Numbness in fingertips, sensations in feet and head all depends on what I eat.

Started with numbness in finger tips, then to my feet feeling weird in the morning when I got up, now I have constant sensations in my feet, I get sores...

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