Representatives from key institutions receive plaques at the inauguration ceremony of the Shenzhen Rare Disease Clinical Medical Research Center. Liu Jinghao

The Shenzhen Rare Disease Clinical Medical Research Center was officially inaugurated today at the University of Hong Kong-Shenzhen Hospital (HKU-SZH). 

The launch coincides with the 18th Rare Disease Day, under the theme “More Than You Can Imagine,” further emphasizing the global commitment to raising awareness and supporting those affected by rare diseases.

The center, spearheaded by HKU-SZH, is a collaborative effort with 22 medical institutions, research institutes, and enterprises, including the Shenzhen Children’s Hospital and the Shenzhen People’s Hospital. 

Its primary goal is to develop an integrated network that encompasses rare disease screening, diagnosis, treatment, scientific research, and services. This network is set to form a robust rare disease prevention and treatment system, offering comprehensive support to patients.

Globally, there are over 7,000 known rare diseases, with only 5% having specific treatments available. In China, two catalogs of rare diseases cover 207 conditions, but more than 90% of these still lack effective treatment options. The Shenzhen Rare Disease Clinical Medical Research Center is poised to tackle these challenges head-on by advancing research and diagnosis, and by seeking out innovative treatment strategies.

Dr. Michael ToKai-tsun (C), director of the orthopedic center at HKU-SZH, provides health consultations for a rare disease patient. Liu Jinghao

Dr. Michael To Kai-tsun, director of the orthopedic center at HKU-SZH, expressed his determination toward the center’s mission. “We are committed to deepening the research and translation of rare diseases to bring more hope to patients,” he said.

The future initiatives of the research center include the establishment of a comprehensive rare disease prevention system, a precision diagnosis platform, the enhancement of multidisciplinary one-stop treatment services, the implementation of standardized diagnosis and treatment protocols, the creation of an information-registration system, and the promotion of transformation of clinical research results.

A multidisciplinary health consultation on rare diseases, along with a public charity art and film exhibition, takes place at the HKU-SZHtoday. Chen Chunfeng 

Shenzhen launched a pilot project for comprehensive services in June 2024 to support rare disease patients, especially those from economically disadvantaged backgrounds. This program allows rare disease patients to apply for financial assistance, with a maximum grant of 50,000 yuan (US$6,868) per person.

Credit: Reporter Zhang Yu and Editors Cynthia, Yunfei , Shenzhen Daily

Edited by HKU-SZH