The inpatient ward of the Rare Disease Department of Peking Union Medical College Hospital (PUMCH) was officially opened on Feb. 29, marking a significant milestone as China's first specialized inpatient ward for rare diseases. The ward welcomed two patients for comprehensive treatment upon opening.

The opening ceremony saw the attendance of notable figures, including Wang Zhizhen, an academician of the Chinese Academy of Sciences and former vice chairman of both the central committee of the Jiusan Society and the 11th National Committee of the Chinese People's Political Consultative Conference (CPPCC).

Other distinguished guests included Zhao Yupei, academician and honorary president of PUMCH; Zhang Xue, secretary of the CPC Committee of Harbin Medical University; Zhong Dongbo, secretary of the CPC Committee of Beijing Municipal Health Commission; Li Linkang, executive director of the China Alliance for Rare Diseases; Zhang Shuyang, president of PUMCH, and Du Bin, vice president of the hospital. Following the ceremony, the guests also visited the first patients admitted to the ward.

From the joint outpatient services to the specialized inpatient ward, the Rare Disease Department continues to enhance medical services, making it more accessible, safer, and more welcoming for patients seeking treatment for rare diseases.

Wang Zhizhen noted that the establishment of the Rare Disease Department and the opening of the inpatient ward marked the beginning of a new and innovative approach to diagnosing and treating rare diseases at PUMCH. She also encouraged young doctors to establish goals and pursue their ideals and values in medicine, guided by mentors and enriched through continuous learning and practice.

Zhang Shuyang noted that the day coincided with the 17th Rare Disease Day, and that the launch of the rare disease inpatient ward holds special significance.

The innovative model of the ward, featuring multidisciplinary collaboration between medical and nursing teams, as well as a unique teaching system for rare diseases, also aims to develop tailored training plans for young doctors and to cultivate more valuable talents in the field of rare diseases.

In April 2023, PUMCH established the Rare Disease Department, serving as an integrated platform that combines medical treatment, education, and research. The department currently consists of three full-time physicians and eight nurses, with plans to recruit seven clinical postdoctoral researchers in 2024.

Shen Min, the executive deputy director of the Rare Disease Department, stated that the ward is equipped with 23 beds and will gradually open to patient admissions. The ward aims to provide comprehensive care for two categories of patients: first, those with diagnosed rare diseases requiring multidisciplinary collaboration for treatment; and second, patients who have undergone careful medical examinations but remain undiagnosed for long.

The operations of the ward adhere to a multidisciplinary approach to the diagnosis and treatment of rare diseases. Beyond the full-time physicians in the Rare Disease Department, various clinical specialties will assign resident physicians, attending physicians, and visiting professors to manage the ward. Additionally, a multidisciplinary team (MDT) consisting of rare disease experts will participate in MDT ward rounds, ensuring high-quality medical care for patients with rare diseases and undiagnosed conditions.

In the initial rotation of the ward's medical team, Dr. Wu Di, deputy chief physician from the Department of Rheumatology and Immunology, serves as the attending physician. The team of resident physicians includes professionals from the departments of internal medicine, endocrinology, neurology and dermatology. The nursing team consists of nurses with diverse backgrounds in cardiovascular, digestive, endocrine, dermatology, critical care, pediatric, and neurological specialties.

The ward operates under a 24-hour responsibility system for resident physicians, employs a three-tier ward round system, and utilizes MDT expert consultations to ensure medical safety and enhance the quality of care.

Additionally, the ward is equipped with a clinical phenotype collection room and has established a platform for genetic analysis and consultation. A multimodal database for rare diseases and undiagnosed conditions is currently under development.

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