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

Healthcare navigator specializing in rare diseases

I’m a physician-turned healthcare navigator specializing in rare diseases. Visit my website and blog at maryrodriguezmd.com...

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Dietary Changes

Hi, I have been diagnosed with a rare genetic condition, AMACR deficiency, that so far is asymptomatic but I do have an elevated level of phytanic and pristanic acid in...

Rare Diagnosis Experiences

How long did it take you to get diagnosed with your rare disease? Did you receive any misdiagnoses?...

Colonoscopy to rule out Mast Cell Activation Syndrome...

What exactly are they trying to find out from the results of Colonoscopy?...

Coping

I'm newly diagnosed and my steroids We're reduced to soon which caused a flare up. Been advised to up steroids which I have . I'm still have bad pain ...

Hypoglobulimia

Just wondering how many others have this, mine was med induced....

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