1. DeltaQuest Foundation, Inc, Concord, MA, USA;
2. Departments of Medicine and Orthopaedic Surgery, Tufts University Medical School, Boston, MA, USA;
3. Rare Patient Voice, LLC, Towson, MD, USA;
4. Department of Epidemiology and Population Health, Division of Community Collaboration & Implementation Science, Albert Einstein College of Medicine, Bronx, NY, USA