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

How Do You Cope?

Does anyone have tips or things that help you cope with living with a rare disease? What do you do to manage...

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...

Trying to make complex care feel less overwhelming

Trying to make complex care feel less overwhelmingI keep thinking about something I’ve seen over and over in complex care: the care...

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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