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

Multiple chemical sensitivity

I am bothered by smells noises cold and smoke...

Guys, I'm so rare, it seems I'm the only one here with autoimmune cholangitis

Please tell me I'm not the only one with this diagnosis, here...

What helps you avoid burnout or chronic illness fatigue?

Personal Strategies – What routines, habits, or lifestyle changes help you avoid burnout or fatigue? (e.g., sleep, nutrition, mindfulness)...

What is the most annoying unsolicited advice you've heard?

What annoying or unhelpful suggestions are you most tired of receiving (unsolicited!) from other people?...

OPLL ossification of posterior longitudinal ligament

Does anyone else have OPLL? Ossification of the posterior longitudinal ligament....

Adult Onset Still's Disease

I would like to find others that have been diagnosed with this. I would like to connect with others that have struggled...

Sweet Syndrome

Any other folks with Sweet Syndrome that would like to share their experience with getting a diagnosis and treatment?...

How Do You Cope?

Does anyone have tips or things that help you cope with living with a rare disease? What do you do to manage...

I’ve had eye muscle weakness and droopy eyelids from Myasthenia Gravis , Has anyone else experienced vision problems due to a rare...

I’ve experienced vision issues linked to a rare condition — specifically eye muscle weakness and droopy eyelids, which were early signs of...

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...

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