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

Extremely rare and ambiguous medical case.

Greetings everyone, i hope you are all doing well. Time and energy are a luxury that unfortunately i can’t afford anymore matter of fact i am using whats left of...

My rare disease caused my kidney failure

I have a condition called FHx suggestive of Inverted Formin (INF2) mutation with peripheral neuropathy it is what caused me to have kidney failure and a bad disease called CMT...

Looking for board members for a nonprofit

I have a podcast called rare connection, I am trying to turn it into a nonprofit. With my podcast I am connecting people with the same or similar conditions, educating...

Undiagnosed insane symptoms

1st time here. I desperately need help as to why I go numb and loss bodily function and become extremely dizzy if I don't have constant heat on me when...

Can anolder person get into a clinical trial

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 impact physical health and spiritual or psychological or...

Looking for fellow giants

Hoping to get a better understanding of Acromegaly and find others with the condition.....

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 sealed. Following the direction of my Movement Disorder...

Anyone have any advice about CIP?(Congenital Insensitivity to Pain)

I am the caregiver of a person with CIP. As he gets older, the challenges he faces have become more concerning. Does anyone have any suggestions on support groups, doctors...

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