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

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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...

Featured

What fills your cups on hard days?

Living with a rare disease or caring for someone who has one can be challenging. We want to know how you keep...

Active 2 days ago

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

Active 2 days ago

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...

Active 5 days ago

Help with mysterious hand condition + gut condition

Hi, please I need your help. I am dealing with a mysterious condition in my hands (under the skin) that seems completely...

Active 8 days ago

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...

I wish others knew that...

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

Invisible Illness

What aspects of your rare disease are invisible to others?...

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?

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