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

Transitioning From Pediatric to Adult Care

Does anyone have experience with transitioning from a pediatric healthcare team to and adult care team? Do you have any tips for...

cerebellar ataxia

Dealing with the many symptoms of ataxia. Has anyone else dealt with this?...

Multiple chemical sensitivity

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

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?...

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...

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...

Life with Rare Coexistence of Systemic Lupus and Ankylosis Spondylitis

Hello, I just curious to find the other 8 - 10 individuals living with the Rare Coexistence of Systemic Lupus and Ankylosis...

Undiagnosed still but something is wrong

Hi, I know there’s something going on, but doctors dismiss me, don’t listen, or tell me they don’t know what’s wrong but...

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Dietary Changes

Hi, I have been diagnosed with a rare genetic condition, AMACR deficiency, that so far is asymptomatic but I do have an...

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