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

SILENT STRUGGLES: UNDERSTANDING EATING DISORDERS"

Eating disorders is an acute and serious psychological health stipulation that is noticeable by deleterious eating manners, which can seriously and crucially...

Amyotrophic Dermatomyositis

Anyone taking injection methotrexate for this?...

From Parkinson’s to Progressive Supranuclear Palsy

10/2020 diagnosed with one disease, 12/2023 P.S.P. I was told that this new disease diagnosis was so much worse. My fate was...

DBS and previous blood clots

I have a complicated history of blood clots that put my scheduled dbs on hold for over 1.5 years. I'm now eligible...

Patient with strange symptoms

I have a patient who has severe pain in her ear that extends down to the inside of her mouth and causes...

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?...

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...

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...

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...

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...

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