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

Caring for a child with a rare disease

This forum is for anyone caring for a child with a rare disease. Introduce yourself, ask a question, or share a story....

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...

Myasthenia gravis

My 2 year boy baby suffering droopy eyelid and we have taken acytylcholinestrease receptor test and observed 1.08 value.though RNS negative, tensilon test negative MRI also negative. Please help me...

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...

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...

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. It causes the gradual breakdown and loss of...

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....

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

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...

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