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

What does advocacy mean to you?

Advocacy can take many different forms - raising awareness in your local community, sharing on social media, and taking legislative action are...

How far do you travel for medical care?

In your diagnosis or treatment journey, how far do you have to go to see doctors and specialists you feel can help...

Grad School

Any tips for managing grad school with rare disease? I suffer from neuromuscular disease and it affects basically every part of my...

Environmental Allergies Or No

I'm dealing with something very weird. This is the 3rd time in the last 5 years or so. I have seen an...

cerebellar ataxia

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

Who has GI issues with CMT?

I have severe constipation and gastroparesis with CMT. Does anyone else suffer GI issues?...

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)...

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