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

The Weight of Rare Disease

This giveaway has closed but we still welcome community members to share their perspectives. Living with a rare disease comes with challenges...

New here today, and looking for folks dealing with MDS.

Been on different prostate cancer sites with interesting info, but can't find much on myelodysplastic syndromes (MDS) anywhere. Know there is only...

Leg movement

2 years ago I started to develop a disorder in both my legs. Can't move properly. I'm 55 Can't run at all...

undiagnosed disease

I don't know what's going on but I'm dying...

I CAN'T OPEN MY FINGERS when my wrist is curled up!!! (docs pls help I wanna play guitar pls)

(my right hand) When I fully extend my wrist, making it bend as far backward as I can, I lose the ability...

Please help my wife, she has a disease that is difficult to diagnose

Symptoms include crooked tongue, difficulty swallowing, bloody sputum, and headaches from the back of the head to the top of the head...

This is not my child that has a Rare illness, It is me.

How to deal with extremely tough days?

Animal Companions

Do you have a pet that has helped you cope with life with a rare disease? Tell us about them and/or share...

Rare Disease Clinical Trials

Have you explored or participated in a clinical trial? What unique challenges do rare disease patients face when it comes to trials?...

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