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

I CAN'T OPEN MY FINGERS when my wrist is curled up!!! (docs pls help I wanna play guitar pls)

(my right hand) When I fully extend my wrist, making it bend as far backward as I can, I lose the ability to open my fingers; it feels as though...

Goosebumps with most emotions/passion, sneezing, yawning..

Since march of this year, every time I cried, goosebumps all over my left side of my body. Over the last few months it’s escalated, to goosebumps all over my...

Please help my wife, she has a disease that is difficult to diagnose

Symptoms include crooked tongue, difficulty swallowing, bloody sputum, and headaches from the back of the head to the top of the head and eye sockets. The pain lasts for about...

This is not my child that has a Rare illness, It is me.

How to deal with extremely tough days?

Animal Companions

Do you have a pet that has helped you cope with life with a rare disease? Tell us about them and/or share a pic!...

Rare Disease Clinical Trials

Have you explored or participated in a clinical trial? What unique challenges do rare disease patients face when it comes to trials? Let this be a place to ask questions...

APLAID

I’m a patient of the NIH. I don’t believe there is anyone else out there with this disease besides my daughter and myself. Has anyone body be diagnosed with APLAID...

Can glaucoma develop even if your eye pressure is normal?

Yes. This condition is called normal-tension glaucoma, and it occurs when the optic nerve is damaged despite having eye pressure within the normal range. The exact cause isn’t fully understood...

How can OCT and retinal photography reveal eye diseases before you even notice symptoms?

OCT (Optical Coherence Tomography) and retinal photography are advanced imaging techniques that allow eye doctors to see beneath the surface of your retina in incredible detail. They can detect microscopic...

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