Professor of economics won the Best Advocacy Award for Rare Disease

In honor of the World Rare Disease Day of 2019， China Charity Federation announced six winners of the Best Advocacy Award for Rare Disease. HE Wenjiong, professor of economics at the School of Public Affairs won the prize for his contributions to welfare policies of rare disease at the provincial and state level, as well as his significant efforts towards increasing the awareness and understanding of rare diseases among the public.

The diagnosis of rare diseases and the availability of drugs to treat them remain significant challenges to the healthcare system in China.With its enormous population, disparate geography and socioeconomic inequalities, China faces considerable obstacles in improving the standard of care for patients who are affected by rare diseases.

Taking Qiqi as an example, he is diagnosed with Gaucher's Disease at three year old. When Prof. HE first met him several years ago, Qiqi was very weak with a big belly caused by enlarged spleen and his treatment was stopped since his family couldn’t afford the high cost of the drug. Prof. HE decided to make some changes for this vulnerable group. He focused on healthcare, policy, and social and work issues related to rare diseases. Due to his efforts, Gaucher’s disease， Amyotrophic lateral sclerosis and Phenylketonuria have been added into the covered disease list of provincial healthcare since January, 2016. Qiqi resumed his treatment and now he can go to elementary school like other 10-year-old boys.

“He devoted a lot time to appeal for patients with rare diseases and speak out for vulnerable groups in many public events, which makes Prof. HE a scholar with big heart and social responsibility,” said XIE Junming, another winner of this award.