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

Mystery

No doctor over many years can diagnosis my skin condition. Hospitals and physicians have no idea what it is. Doesn’t show in blood work. I have researched for many years...

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 wear on me, especially because I'm big on...

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. I went to ER. UTI and stomach pain...

Have you ever seen your rare disease represented in the media?

How did it make you feel? Did you feel it was an accurate depiction? Tell us more about what you would like to see and what effect you hope it...

Experimental treatments

I have TOS (thoracic outlet syndrome). Unfortunately, the ONLY treatment that I have gotten any relief from my symptoms with is dry needling which the insurance companies consider experimental even...

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 with abdominal pain. They said she had colitis...

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?...

How to Be a Great Friend to Someone Living With a Rare Disease

What characteristics, behaviors, and kindnesses mean the most to you from people who are not living with a rare disease?...

High red cells and tired constantly.

I have morphea and a spinal malformation, constantly sore points underneath each morphea patch, muscle spasms, tiredness and watery vision. I have a high red cell count, it's at the...

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. Gravis....

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