A manuscript co-authored by Shayna Egan, Maggie Paulich, Elliott Blatt and Chris Evans reports on a survey of patients with Wilson Disease and their caregivers. This is the first study in this rare neurometabolic disease to report on the multidimensional impact of this disease directly by those affected by the disease: Dress A, Theodore-Oklota C, Egan S, Paulich M, Blatt E, Evans CJ. The patient-reported experience of living with Wilson disease. Future Rare Disease 2021 (ePub ahead of print).