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

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)...

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 a high red cell count, it's at the...

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What fills your cups on hard days?

Living with a rare disease or caring for someone who has one can be challenging. We want to know how you keep your own cup full while navigating difficult symptoms...

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?...

Dealing w more than one

Hi, I'm happy to have run across this email, community forum. I currently suffer with HS & also Hydrocephalus. These are two rare diseases. How did I get both... Guess...

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 with this...

Anyone Had a Rare Eye Condition First Spotted During a Routine Eye Exam?

I recently went in for a standard eye test, thinking I needed a new prescription, but the optician noticed something unusual. I was referred for further tests, and now the...

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 symptom, treatment, or other challenges?...

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