Mon, 03/01/2010 - 16:18
Chinese charity helps raise awareness of rare diseases
Shanghai. March 1. INTERFAX-CHINA - China Charity Federation (CCF) and the Chinese Health Education Network (CHEN) have jointly launched an educational campaign to increase awareness and improve the treatment of rare diseases in China, the CCF and CHEN announced on Feb. 26 in Beijing.
According to the announcement, the CCF and CHEN will conduct the campaign in Beijing. Throughout March, the two sides together with the Institute of Basic Medical Sciences under the Chinese Academy of Medical Sciences, Peking Union Medical College Hospital and other health-related agencies will organize academic seminars and expert consultations, as well as release rare disease handbooks in universities and communities in Beijing.
"At present, most Chinese hospitals do not have the necessary equipment to diagnose rare diseases, and none of the domestic pharmaceutical companies have developed specific medicines to treat rare diseases. Furthermore, the government does not offer health insurance to cover such diseases," Liu Guolin, the general secretary of the CCF, said at the press conference.
Beginning last year, Genzyme Corp. has donated RMB 200 million ($29.28 million) annually for the treatment and drug costs for 134 sufferers of gaucher disease, a genetic disorder, in China. In addition, Genzyme donates RMB 2 million ($292,825) to the Rare Disease Relief Pblic Fund, which is used for trainging doctors and raising public awareness about rare diseases.
"Genzyme will start research and develop drugs and treatment technologies over the next two years in accordance with Chinese patients, as Asian people may have different rare diseases from European and American people," Michael Glynn, senior vice president of Japan-Asia Pacific at Genzyme Corp., said at the press conference.
The World Health Organization estimates that between 5,000 and 6,000 distinct rare diseases exist such as Gaucher disease, mucopolysaccharidosis, Fabry disease, osteogenesis imperfecta and Pompe disease. Of which, 80 percent are genetic, and less than 1 percent of rare diseases have an effective treatment.
-YCX
