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

Weird disorder that is causing a lot of pain and discomfort

I need help looking for a place to start researching whatever medical condition that has me bedridden almost all day and night...

Madelung's

I am helping a friend in Gulf Breeze, Florida (next to Pensacola) who is suffering from benign symmetric lipomatosis (Madelung’s disease) He...

Ehlers Danlos and Epydermilosis Bulosis

I was born in 1958. I had two rare diseases Ehlers Danlos and Epydermilosis Bulosis but neither were severe.It took until 2004...

Podcast opportunity for Rare Disease Patients

I have a podcast called Rare connections on YouTube. If any rare disease advocates are interested in talking about their rare condition...

I have Myasthenia Gravis and Parkinsons

I would like to find someone else or a group that I can discuss my symptoms and problems with. Some of my...

Anyone have any advice about CIP?(Congenital Insensitivity to Pain)

I am the caregiver of a person with CIP. As he gets older, the challenges he faces have become more concerning. Does...

Looking for fellow giants

Hoping to get a better understanding of Acromegaly and find others with the condition.....

Unexplained Night sweats

I have been experiencing night sweat every night basically ever since my diagnosis with NMO. Im wondering have anyone else experienced un...

Does anyone have olgilvie syndrome?

Does anyone have olgilvie syndrome and what did Dr say prognosis was? This is very rare from what we were told....

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...

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