1. Hansjörg Wyss Department of Plastic Surgery, NYU Grossman School of Medicine, New York, New York, USA.
2. Division of Medical Ethics, Department of Population Health, NYU Grossman School of Medicine, New York, New York, USA.
3. Global Rare Disease Patient Advocacy, Pfizer, Inc., New York, New York, USA.
4. Medical and Patient Affairs, Encoded Therapeutics, South San Francisco, California, USA.
5. Department of Epidemiology and Health Promotion, Health Sciences Library, NYU Grossman School of Medicine, New York, New York, USA.
6. Division of Hospital Medicine, Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
7. Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA.