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

Hope for Cushing’s Disease

I was diagnosed with Cushing’s disease in ‘98. Textbook case with everything effected. Pituitary resection lead to reoccurrence so I had Gamma...

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...

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...

10 Year old with medical mystery

Good Day Everyone My son has been sick for about 4 months. He is seeing doctors and was in the hospital more...

A Nauseating combo of disorders from birth only to worsen 14 years later

So Being born with the combination of ADHD, Autism and Tourette syndrome was bad enough only to have injury after injury then...

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