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

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?...

Environmental Allergies Or No

I'm dealing with something very weird. This is the 3rd time in the last 5 years or so. I have seen an Allergist, a ENT doctor, did many tests and...

Grad School

Any tips for managing grad school with rare disease? I suffer from neuromuscular disease and it affects basically every part of my body. I will be studying data analysis....

Holidays with a Rare Disease

The holidays can be exciting but also come with many challenges for those with rare diseases. What special considerations do you have to take into account during this time of...

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