Skip to Accessibility Menu Skip to Login Skip to Content Skip to Footer

Forums

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

What is Retinitis Pigmentosa, and how does it affect vision over time?

Retinitis Pigmentosa (RP) is a rare, inherited eye disease that affects the retina, the light-sensitive tissue at the back of the eye...

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

I want to know the statistics regarding how many people there are in the world diagnosed with both Neuromyelitis Optica and Myasthenia...

Nags and /or citrine deficiency

Looking for others who have NAGS and or Citrine Deficiency. I'm curious of how are others doing with having these rare diseases/deficiencies?...

What’s wrong with my daughter

Hi my name is araselys. My daughter’s name is aniah. Aniah is 16, I took her to the hospital a year ago...

Experimental treatments

I have TOS (thoracic outlet syndrome). Unfortunately, the ONLY treatment that I have gotten any relief from my symptoms with is dry...

Road to NMOSD

In 2009 I began having more symptoms of blurred vision, double vision, back pain, leg pain Iretractable vomiting, nausea, hiccuping,walking became impaired...

help: Persistent Sensation of Heaviness from Clothing on Chest! – ruining my life!

I'm a 19-year-old who’s been dealing with a frustrating issue since I was around 8 years old, and it's really starting to...

Long time to diagnosis

I had symptoms with Bechets when I was 10 yrs old hospitalized with terrible mouth sores and pain. From abused home. No...

Welcome! Let's Get to Know Each Other.

We are glad you are here! Please introduce yourself and let us know which rare disease impacts your or your loved one's...

Coping with books

I fill up my cup by reading. I love science fiction specifically, because it tells us about building the future...

Categories

Select a category to find topics that interest you.