Visit of NAERES representatives to the Beijing Orphan Center

Academician Alexander Rumyantsev, President of the National Association of Rare Disease Experts (NAEREZ), President of the CIS Orphan Consortium, and Nuria Musina, Executive Director of the CIS Orphan Consortium and Director of International Cooperation at NAEEREZ, visited China's leading center for rare diseases—the Orphan Center at Peking Union Medical College Hospital (PUMCH).

The visit included a meeting with Professor Zhang Shuyang, President of PUMCH, Vice President of the Chinese Medical Association, and President of the Rare Diseases Foundation of China.

PUMCH by the numbers:

• Founded in 1921,

• Ranked number one among all hospitals in China for 14 consecutive years,

• Ranked among the top 100 best hospitals in the world according to Newsweek,

• More than 2,000 beds, 49 clinical departments, 29 research centers,

• Annually – 3.8 million outpatient visits and over 80,000 hospitalizations.

Orphan Center at PUMCH:

• has 35 specialized beds,

• brings together specialists from over 30 medical specialties,

• uses modern genomic technologies (NGS, WES, WGS),

• annually diagnoses over 2,000 complex cases of rare diseases,

• has developed diagnostic protocols for 121 orphan pathologies,

• plays a key role in the development of China's National Rare Disease Registry System.

Chinese colleagues expressed interest in developing cooperation with the CIS Orphan Consortium.

The parties agreed to jointly participate in international conferences, educational seminars, and other events aimed at developing systemic care for patients with rare diseases.