The 7th China Rare Disease Summit

The 7th China Rare Disease Summit opened in Shanghai greatly during September 14-16, 2018. The summit was held by Chinese Organization for Rare Disorders (CORD) and National Children Medical Center. Since 2012, China Rare Disease Summit has been working on the development and improvement of rare diseases’ treatment. The event has become the most comprehensive summit of rare disease in China.

As estimated, there are more than 10 million patients with rare diseases in China. However, as in Taiwan, few of them can be treated. The theme this year is Innovation and Collaboration- Care for Rare. It shows the importance of cooperation between the government, society, patients and medical industry, as well as the significance of innovated research and medication developing model.

The attention of this three-day summit, joined by hundreds of international speakers, centers on China’s new born gene tests, children’s diagnosis of rare diseases, building of rare disease clinical service network, speeding up medicine research and development, medication payment of health insurance, and the development of these issues worldwide. In April 2018, the “spring” for rare disease comes to China when the government published the first National Rare Disease Catalogue, which includes 121 kinds of rare disease.

Kevin Huang, director of CORD, showed his expectation for the development in the next ten years, including updating diagnosis and treatment for rare diseases, building patient-centered clinical service, strengthening the cooperation of government and society, expanding the research, etc.

Taiwan Foundation for Rare Disorder (TFRD) was invited to share experience in Taiwan. The founder of TFRD, Ms. Serena Wu, shared on the topic “Formation of Patient Organization- Key to its Successful Operation.” The executive director of TFRD, Kuan-Ju Chen, also talked about “Principles of Managing the Relationship between Patient Organizations and Pharma Companies: Taiwan Rare Disease Foundation as an Example.”

In the closing ceremony, Ms. Serena Wu said “Rare diseases concern everyone, and we have the obligation not to give up nor be pessimistic”. She also pointed out the way to improve caring of rare diseases: The medication of rare disease is a business opportunity in China because so many patients need it. It takes objective and reasonable communication to find suitable solutions, as taking good care of rare disease patients is one index of social progress.

Translator: Newny Chiang (MS), Reviewer: Albert Kuo