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

Has Anyone Heard of Retinitis Pigmentosa? Rare Eye Disease Discussion

Hi everyone, I recently came across Retinitis Pigmentosa (RP) , a rare genetic eye disease that affects the retina and causes slow, progressive vision loss. It typically starts with difficulty...

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 to see a Geniticist before they were both...

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 please message me....

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 symptoms kind of get "mixed up" with other...

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 anyone have any suggestions on support groups, doctors...

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 explained night sweats. I have had all kind...

What does advocacy mean to you?

Advocacy can take many different forms - raising awareness in your local community, sharing on social media, and taking legislative action are just a few examples. Are you involved or...

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...

Mast Cells trigger my self

anyone else have Mast cell and histamine problems? hot and cold intolerance?...

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