Inhonor of the World Rare Disease Day of2019， China CharityFederation announced six winners of the Best Advocacy Award forRare Disease. HE Wenjiong,professor of economics at the School of Public Affairs wonthe prize for his contributions to welfare policies of rare disease at theprovincial and state level, as well as his significant efforts towardsincreasing the awareness and understanding of rare diseases among the public.

Thediagnosis of rare diseases and the availability of drugs to treat them remainsignificant challenges to the healthcare system in China.With its enormouspopulation, disparate geography and socioeconomic inequalities, China facesconsiderable obstacles in improving the standard of care for patients who areaffected by rare diseases.

TakingQiqi as an example, he is diagnosed with Gaucher'sDisease at three year old. When Prof. HE first met him severalyears ago, Qiqi was very weak with a big belly caused by enlarged spleen andhis treatment was stopped since his family couldn’t afford the high cost of thedrug. Prof. HE decided to make some changes for this vulnerable group. Hefocused on healthcare, policy, and social and work issues related to rarediseases. Due to his efforts, Gaucher’s disease， Amyotrophiclateral sclerosis and Phenylketonuria havebeen added into the covered disease list of provincial healthcare sinceJanuary, 2016. Qiqi resumed his treatment and now he can go to elementaryschool like other 10-year-old boys.

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