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

I am diagnosed with both Neuromyelitis Optica and Myasthenia Gravis. I am searching for others with the same diagnosis.

Having both Myasthenia Gravis and Neuromyelitis Optica is extremely difficult. Find medications that address these diseases is an ongoing problem. I would...

VEXAS - In Honor of Max Gyllenskog Part 1

Here's part 1 of a series I'm working on to try to help other people understand this disease as I'm learning it...

VEXAS - In Honor of Max Gyllenskog Intro

VEXAS Syndrome: Spread the Word When Max Gyllenskog first began experiencing significant health issues, the puzzling array of symptoms left everyone baffled...

Dealing w more than one

Hi, I'm happy to have run across this email, community forum. I currently suffer with HS & also Hydrocephalus. These are two...

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...

Weird disorder that is causing a lot of pain and discomfort

I need help looking for a place to start researching whatever medical condition that has me bedridden almost all day and night...

Madelung's

I am helping a friend in Gulf Breeze, Florida (next to Pensacola) who is suffering from benign symmetric lipomatosis (Madelung’s disease) He...

Ehlers Danlos and Epydermilosis Bulosis

I was born in 1958. I had two rare diseases Ehlers Danlos and Epydermilosis Bulosis but neither were severe.It took until 2004...

Podcast opportunity for Rare Disease Patients

I have a podcast called Rare connections on YouTube. If any rare disease advocates are interested in talking about their rare condition...

I have Myasthenia Gravis and Parkinsons

I would like to find someone else or a group that I can discuss my symptoms and problems with. Some of my...

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