Skip to Accessibility Menu Skip to Login Skip to Content Skip to Footer

Forums

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

Undiagnosed all season cold sensation of body

I'm 59 and I have a condition for over last 10 years that is now immensely impacting quality of my life. I feel cold getting absorbed throughout my body except...

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, trip up stairs n more things than I...

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 to open my fingers; it feels as though...

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 and eye sockets. The pain lasts for about...

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 a pic!...

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? Let this be a place to ask questions...

APLAID

I’m a patient of the NIH. I don’t believe there is anyone else out there with this disease besides my daughter and myself. Has anyone body be diagnosed with APLAID...

Categories

Select a category to find topics that interest you.