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.

High red cells and tired constantly.

I have morphea and a spinal malformation, constantly sore points underneath each morphea patch, muscle spasms, tiredness and watery vision. I have...

help: Persistent Sensation of Heaviness from Clothing on Chest! – ruining my life!

I'm a 19-year-old who’s been dealing with a frustrating issue since I was around 8 years old, and it's really starting to...

How can we support you?

What information do you hope to find on our site? Is there anything in the rare community as a whole you would...

Finding a specialist

I learned I not only have osteonecrosis in both my hips, but also my left knee. All due to high doses of...

Anyone have any advice about CIP?(Congenital Insensitivity to Pain)

I am the caregiver of a person with CIP. As he gets older, the challenges he faces have become more concerning. Does...

What do you guys think this is

I have a couple of things going on but I don’t have a diagnosis yet but wanted to see what you all...

Hypoglobulimia

Just wondering how many others have this, mine was med induced....

Life with Rare Coexistence of Systemic Lupus and Ankylosis Spondylitis

Hello, I just curious to find the other 8 - 10 individuals living with the Rare Coexistence of Systemic Lupus and Ankylosis...

Healthcare navigator specializing in rare diseases

I’m a physician-turned healthcare navigator specializing in rare diseases. Visit my website and blog at maryrodriguezmd.com...

SILENT STRUGGLES: UNDERSTANDING EATING DISORDERS"

Eating disorders is an acute and serious psychological health stipulation that is noticeable by deleterious eating manners, which can seriously and crucially...

Categories

Select a category to find topics that interest you.