Skip to Accessibility Menu Skip to Login Skip to Content Skip to Footer

Forums

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)...

Featured

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?...

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...

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?...

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

I’ve experienced vision issues linked to a rare condition — specifically eye muscle weakness and droopy eyelids, which were early signs of Myasthenia Gravis in my case. It started with...

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 the type of support you need changed...

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 than once and still he is not beter...

Categories

Select a category to find topics that interest you.