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

Patient of HHT and Mom of child with HHT

I was diagnosed with HHT (a rare blood vessel disorder) in 2023 after 4 years of searching for answers. My son was...

Life with Rare Coexistence of Systemic Lupus and Ankylosis Spondylitis

Hello, I just curious to find the other 8 - 10 individuals living with the Rare Coexistence of Systemic Lupus and Ankylosis...

lichen sclerosus

I was having TERRIBLE itching in my genital area. i would explain my problem. they would say i must have vaginal infection...

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...

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