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

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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...

Featured

What fills your cups on hard days?

Living with a rare disease or caring for someone who has one can be challenging. We want to know how you keep your own cup full while navigating difficult symptoms...

Active 3 days ago

My rare disease caused my kidney failure

I have a condition called FHx suggestive of Inverted Formin (INF2) mutation with peripheral neuropathy it is what caused me to have kidney failure and a bad disease called CMT...

Active 3 days ago

Extremely rare and ambiguous medical case.

Greetings everyone, i hope you are all doing well. Time and energy are a luxury that unfortunately i can’t afford anymore matter of fact i am using whats left of...

Active 3 days ago

unexplained throat and neck pain for 7 weeks now.

hi guys. was hoping anybody could help me out. about 7 weeks ago after an upper respiratory infection, i started to have throat pain. it wasnt like a sore throat...

Active 3 days ago

Finding a specialist

I learned I not only have osteonecrosis in both my hips, but also my left knee. All due to high doses of steroid for a long period at a time...

Active 3 days ago

Dont know

My wife has igg4-- retroperitoneal fibrosis -- autoimmune disease. She has a lot of things wrong with her. She takes over 40 pills aday. I have no one to talk...

Active 3 days ago

Unknown pain disease?

Looking for help with my condition. After seeing multiple Dr’s the past three years and the last being a neurologist. It’s a mystery as to what is going on. These...

Active 3 days ago

Medical Mystery - Can anybody help?

My current symptoms: Extreme fatigue and tiredness throughout the entire day Dissociation / feeling of faintness Extreme mental fatigue and brain fog Trouble concentrating and poor memory This all started...

Active 3 days ago

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 appreciate any advice or feedback. I am also...

Active 3 days ago

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, in an easier way. I hope you will...

Active 5 days ago

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. It started with a blood clot in his...

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