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Forums

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

DBS and previous blood clots

I have a complicated history of blood clots that put my scheduled dbs on hold for over 1.5 years. I'm now eligible for the surgery but at an extremely high...

Living With Adult-onset Still's Disease?

Has anyone been diagnosed with adult-onset Still's disease? What was your diagnosis experience like? How do you manage life with AOSD?...

Transitioning From Pediatric to Adult Care

Does anyone have experience with transitioning from a pediatric healthcare team to and adult care team? Do you have any tips for others navigating this, either as a patient or...

cerebellar ataxia

Dealing with the many symptoms of ataxia. Has anyone else dealt with this?...

Holidays with a Rare Disease

The holidays can be exciting but also come with many challenges for those with rare diseases. What special considerations do you have to take into account during this time of...

West Nile Virus

Long term walking difficulty. Walk very slowly with a cane....

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?...

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...

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