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

Multiple chemical sensitivity

I am bothered by smells noises cold and smoke...

SMS

Does anyone on here have Smith-Magenis syndrome or have family members with it?...

How has living with a rare disease impacted you?

Those living with a rare disease are often the experts on their disease. To better understand the patient experience and realities of rare diseases, we are fielding our first Rare...

ALS

My 70 year old husband was diagnosed with ALS 1 month ago. He has dementia as well. He doesn't comprehend what's going on or what's wrong with him. He knows...

What could workplaces do to foster a more disability-inclusive culture?

What ideas do you have for employers to create a more supportive work environment for people with visible or invisible disabilities?...

Hope for Cushing’s Disease

I was diagnosed with Cushing’s disease in ‘98. Textbook case with everything effected. Pituitary resection lead to reoccurrence so I had Gamma Knife. I went into remission and ended up...

Who has GI issues with CMT?

I have severe constipation and gastroparesis with CMT. Does anyone else suffer GI issues?...

Sweet Syndrome

Any other folks with Sweet Syndrome that would like to share their experience with getting a diagnosis and treatment?...

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