Forums

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

Where do you find support?

Who supports you in a meaningful way? What does their support look like? As you have moved along your rare disease journey...

Has anyone found effective joint pain therapy that actually works long-term?

Hi everyone, I’ve been dealing with joint pain for quite a while now, mostly in my knees and occasionally in my shoulders...

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...

How to find a doctor that cares and is willing to dig deeper

Hi RD friends! My daughter has some type of sero-negative auto-immune condition, and has had it since she was 12 (she's 32...

Help Cure compass

I have a daughter with nf1 and didnt get info or updates on treatments so i developed a web site to get...

cerebellar ataxia

Dealing with the many symptoms of ataxia. Has anyone else dealt with this?...

why do things aways have to be YOUR way?

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...

Featured

What is your go-to item or ritual for finding physical comfort during a flare-up or a hard health day?

Whether it’s a specific pillow, a favorite tea, a warm bath, or a cozy blanket, we want to know what brings you...

Anti Myelin Associated Glycoprotein Antibodies

How to you cope with sensory attaxia? Do you have fatigue? What type of exercise helps keep muscles strong? What other symptoms...

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