Establishing a rare diseases center: Experiences from Western China

Abstract

Rare diseases pose unique challenges to health care delivery. In August 2016, the West China Hospital of Sichuan University (WCHSU) established a rare diseases center. This center has created a multidisciplinary team of rare disease experts. The center provides expedited pathways online and offline for patients with rare diseases to save them time and money, to improve their experience, and to increase the hospital's efficiency. At the same time, the center regularly organizes public education campaigns and it offers free consultations to enhance awareness of rare diseases. Establishment of the rare disease alliance and facilitation of 5G-based remote multi-disciplinary consultations will help to improve the level of diagnosis and treatment and to solve problems with diagnosis and treatment encountered by local patients with rare diseases. WCHSU's rare diseases center has been feasible, acceptable, and effective in Western China and it should benefit patients, doctors, and hospitals. The center should lead to significant improvements in treatment for patients with rare diseases. The successful establishment of a rare diseases center here may be a useful reference for other parts of the world.