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Forums

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

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...

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....

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...

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...

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...

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...

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