To better serve patients with rare diseases in western China, the inaugural meeting of Western Alliance of Drug Use for Rare Diseases was held in Xi 'an on February 17, 2023.
This meeting was hosted by Shaanxi Pharmaceutical Association, and organized by the First Affiliated Hospital of Xi 'an Jiaotong University (XJTU). Staff from more than 30 hospitals in Shaanxi, Sichuan, Xinjiang, Gansu, Ningxia, Guizhou, Yunnan and other provinces and cities attended the meeting online or in-person. Feng Lei, Chief Consultant of Shaanxi Pharmaceutical Association, Liu Qingguang, Vice President of our hospital, Feng Weiyi, Director of Department of Pharmacy of our hospital and Gao Hua, Director of Department of Pharmacy of General Hospital of Ningxia Medical University were invited to attend the meeting.
The inaugural meeting was chaired by Feng Weiyi. Feng Lei delivered a speech on behalf of Shaanxi Pharmaceutical Association. On behalf of our hospital, Liu Qingguang congratulated the founding of the alliance, highlighting that the diagnosis and treatment levels of rare diseases are relatively low in hospitals from the western region. The founding of this alliance is expected to better standardize and rationalize the diagnosis and treatment of rare diseases, offering timely diagnosis and treatment for patients with rare diseases.
Feng Weiyi, Chairman of Western Alliance of Drug Use for Rare Diseases introduced the objective, significance, organization form, future blueprint and subsequent work plan of the alliance. He stressed that the alliance is jointly initiated by Department of Pharmacy of our hospital and Shaanxi Pharmaceutical Association, which can better share medical resources, exchange and share information, strengthen academic exchanges among hospitals in the field of drug use for rare diseases, improve the management capability of Department of Pharmacy for rare diseases, and deliver better drug treatment for patients with rare diseases.
After the inaugural ceremony, the session of academic lectures was launched. Professor Xue Feng, Director of Department of Hematology from Tianjin Institute of Hematology, introduced the latest progress on the diagnosis and treatment of hemophilia. Professor Mo Xiaolan from Guangzhou Women and Children’s Medical Center illustrated the profile of SMA drugs. Professor Shi Zhihong from our hospital introduced the burden and prognosis of ILD. Deputy Director Sheng Changcheng from Department of Pharmacy of Guizhou Provincial People's Hospital elucidated the use of model-guided precise drug delivery technology to treat rare diseases. After the academic session, all participants delivered exchange and discussion regarding professional topics.
