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

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...

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...

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...

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...

what are some tips for managing rar disease?

Early Diagnosis: First and foremost, it's crucial to get a proper diagnosis as early as possible. Due to the rarity of the disease, it might take longer than usual. Consulting...

cerebellar ataxia

Dealing with the many symptoms of ataxia. Has anyone else dealt with this?...

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