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

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...

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...

FATTY LIVER CANCER

MY CANCER WAS MISSED ON MY XRAYS 1 1/2 YEARS AGO AND NOW I HAVE A DEATH SENTENCE IS THERE ANYTHING THAT...

Living with Mast Cell Activation

62 years young and finally finding myself... Who would I have been if I was not sick for 62 years??? Now I...

Anyone experience this and how do we get help??

My son and I started having symptoms a year and a half ago, started after a camping trip and we had a...

Aunauthorized people try to get your medical information

Hello, My deceased brother’s ex wife contacted Mayo Clinic and my brother’s attorney trying to get access to my medical records. Has...

Undiagnosed still but something is wrong

Hi, I know there’s something going on, but doctors dismiss me, don’t listen, or tell me they don’t know what’s wrong but...

Ancestral inbreeding

As a decendent of lots of inbreeding, I have many expressed recessive "rare" traits. None have proven fatal or longevity-altering (yet), but...

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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...

Mast Cells trigger my self

anyone else have Mast cell and histamine problems? hot and cold intolerance?...

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