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

Burning ear syndrome

I began noticing 1 ear red and not the other rarely both ears, the red ear will get warm...

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 diagnosed a year later. I receive Feraheme iron...

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 Spondylitis (Axial for me ). Tbh, living with...

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Biggest challenges you face in your current journey?

Hi- I'm just curious about how people navigate this journey well. What are your biggest challanges and support needs? Where do people go to get support? What actually makes a...

lichen sclerosus

I was having TERRIBLE itching in my genital area. i would explain my problem. they would say i must have vaginal infection. or yeast infection. no,no ,no. there is no...

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...

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 COULD HELP ME Pro Long OR BEAT THIS...

Traveling With a Rare Disease

Tell us about your travel experiences? How do you prepare for a long or short trip? Do you have any tips to share with the community?...

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 am finding out and finally knowing these words...

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