After being diagnosed with a disabling, chronic disease, such as some retinal diseases and neurodegenerative diseases, there is nothing more disheartening than for the patient to hear that nothing can be done to treat it. Tragically, some diseases still lack a medical treatment to slow, stop, or reverse their course. In addition, even when therapy is available to treat a chronic disease, some patients are often left with distressing symptoms. Research to alleviate these symptoms has received relatively little attention, and physicians struggle with how to provide care for these patients. Studies are needed to understand and mitigate patients' disease-related symptoms that often result in significant distress, morbidity, and reduced quality of life. In this Commentary, we discuss research that is based on patient feedback and focused on investigating the concerns pertinent to patients.
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