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

I wish others knew that...

What is one thing you wish more people knew about living with a rare disease?...

Persistence in believing in yourself.

It has been a long ten years. Ten years feeling like they were stolen only to realize that they were actually wrapped...

Mucosal melanoma

I'm not sure if I belong in this group since my oral mucosal melanoma surgery successfully removed the cancer with large and...

From Parkinson’s to Progressive Supranuclear Palsy

10/2020 diagnosed with one disease, 12/2023 P.S.P. I was told that this new disease diagnosis was so much worse. My fate was...

How do you convince a dr. to even LOOK under the hood. Not just at the chassis. I FELT demeaned!!

Unexplained 2 week fever multiple times

Started in 2022 and just finishing the 5th time. I live in upstate NY 6 months and west central Florida the other...

Happy New Year ❤️

Id like discuss topics about rare combination Cardiac Amyloidos and Multiple Myeloma...

Traveling With a Rare Disease

Tell us about your travel experiences? How do you prepare for a long or short trip? Do you have any tips to...

How to deal with extremely tough days?

Biggest challenges you face in your current journey?

Hi- I'm just curious about how people navigate this journey well. What are your biggest challanges and support needs? Where do people...

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