On February 28, 2018, an event marking the 11th International Rare Disease Day and a New Drug Development Forum was held at the Lecture Hall of PUMCH. The event was hosted by PUMCH in cooperation with the Rare Disease Research Center, Chinese Academy of Medical Sciences and Rare Disease Society of the Chinese Research Hospital Association. Under the theme “Connection and Company”, the activity is meant to show concern, care and support for rare disease groups as part of the hospital’s commitment to helping build a healthier China.
PUMCH Vice President Zhang Shuyang addressed the event, and Wang Yi’ou, initiator of Beijing Illness Challenge Foundation, gave a speech on behalf of rare disease patients. Followed was a heart-warming short video featuring the life of 30 patients. Representatives of patients and doctors then staged performances and the event came to a climax in a choir.
At the drug forum in the afternoon, guests had in-depth discussions on clinical research and drug development. Topics included rare disease registration and research, which was led by Vice President Zhang Shuyang, reform in the assessment and approval of orphan drugs, accelerating of marketing, and challenges and ethical assessment of clinical trials.