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

Anyone Had a Rare Eye Condition First Spotted During a Routine Eye Exam?

I recently went in for a standard eye test, thinking I needed a new prescription, but the optician noticed something unusual. I...

Dystonia, epilepsy or something else?

I gave been having worsening bilateral facial spasms 1-3x per day that last 2-5 minutes. They are preceded by light nausea and...

Undiagnosed: chest tightness and pressure in head

For the last 3 years my male partner of 8 years, who appears perfectly healthy, has been plagued by unexplained symptoms that...

Undiagnosed all season cold sensation of body

I'm 59 and I have a condition for over last 10 years that is now immensely impacting quality of my life. I...

Awake but trapped

I’m awake, fully aware that I cannot move. No idea how long it will last? Will I stop breathing? Nobody home for...

At 77,my long life with Hypermobile Ehlers-Danlos Syndrome Is beyond painful; others can’t see it

Has Anyone Here Been Diagnosed with Retinitis Pigmentosa?

Has anyone here been diagnosed with Retinitis Pigmentosa (RP)? It’s a rare inherited retinal disease that often starts with night vision problems...

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...

People do not understand that fatigue is different from exhaustion.

Having a disease without a name

Greetings, I have what may be an autoinflammatory disorder vs an unlabeled rare condition that affects my barrier to inflammation. We found...

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