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Edward Perez66 said:Health Information - How people living with rare chronic illnesses search for, find, and use medical info
Hey everyone!
We’re reaching out to anyone dealing with myasthenia gravis, scleroderma, or SLE—if you have a few spare 15 minutes, we’d really love your help with a research study!
Everything is totally anonymous and completely voluntary, but honestly, your input would mean the world to us.
This study is being run by the University of Illinois Urbana-Champaign. We’re basically trying to figure out what kind of info you actually need regarding your condition, how you go about hunting for it, how that info hits you emotionally, and how it shapes the medical decisions you make.
Our hope is that once we wrap this up, the findings will give clinics and hospital departments some real, actionable insights to improve how they communicate with patients, which should also be super helpful for patient advocacy groups.
Thanks so much in advance for helping us out!