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

Active today

Do you consider yourself to have an invisible illness?

What aspects of your rare disease are invisible to others? Share in the comments below....

Active today

Invisible Illness

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

Active 3 days ago

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...

Active 4 days ago

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?...

That I can control my symptoms if I make an effort

why do things aways have to be YOUR way?

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