On the afternoon of October 24, 2018, the China Alliance for Rare Diseases (CARD) Inauguration & First Academic Conference was held in PUMCH. It also featured the release of China First Batch Rare Diseases Catalogue and Explanations. Present at the event were: Zhao Yupei, academician of the Chinese Academy of Sciences and PUMCH president, Zhang Zongjiu, director of Department of Medical Administration, National Health Commission (NHC), Liang Wannian, director of Department of Healthcare Reform, NHC, Li Linkang, vice president of Chinese Hospital Association (CHA), Liu Dianbo, president of China Pharmaceutical Innovation and Research Development Association (PhIRDA), Song Ruilin, executive president of PhIRDA, Wang Faqiang, president of Chinese Research Hospital Association (CRHA), and Du Xian, editor-in-chief of the People's Medical Publishing House.

NHC Minister Ma Xiaowei delivered an important speech on the establishment of CARD. He said the alliance will help integrate resources for rare diseases, pool efforts from medical institutions, research institutes, social societies and enterprises to boost the prevention and treatment of such diseases.

The ceremony was chaired by CHA Vice President Li Linkang. The conference approved the list of council members. PUMCH President Zhao Yupei will act as council president. Zhao Yupei and Zhang Zongjiu unveiled the plate together.

The Catalogue was initiated by President Zhao, led by Professor Zhang Shuyang, president of Rare Diseases Society, CRHA, and compiled by more than 80 experts from PUMCH and other related institutions. With 700,000 words, it is the first of a series, and published in October 2018 by the People's Medical Publishing House.

CARD is a national, non-profit, cooperative platform of communication. It was approved by NHC, jointly initiated by PUMCH, PhIRDA, CHA, CRHA and voluntarily joined by more than 50 related medical institutions, colleges, research institutes and enterprises. It sticks to patient-centered development ideas, and aims to integrate rare disease resources and personnel to promote prevention, treatment, clinical and scientific research, drug development, so as to push forward China’s bio-medicine and healthcare.

PUMCH, a national guidance center for difficult and serious cases appointed by NHC, has been committed to rare disease researches. At the end of 2016, it led 20 large Chinese hospitals rich in rare disease resources to start a clinical cohort study and construct a national registration platform, which is a key national project for the period 2016-2020. From 2017, the hospital opened a rare disease clinic to provide zero-distance service for patients by organizing a multi-disciplinary expert panel and genetic testing and consultation team.  

Zhao Yupei and Zhang Zongjiu unveil the plate.

Presenting ceremony of China First Batch Rare Diseases Catalogue and Explanations

Leaders and guests attending the event