China is now an official member of the World Federation of Hemophilia's (WFH) Global Alliance for Progress (GAP) program and is promoting care for hemophilia patients ahead of World Hemophilia Day on April 17.
WFH, together with the Hemophilia Home of China (HHC), launched here Tuesday the Alliance in China, which means China is now entitled to aid from the international organization on hemophilia treatment.
Mark Skinner, president of the World Federation, said at the ceremony that WFH now has 15 members, including China, and 9,019 identified and registered hemophilia patients worldwide.
Robert Leung, regional program manager of Asia and Western Pacific, WFH, said that the membership would help China improve its six major hemophilia treatment centers, set up a training center, start patient registration work, and gain more support from the government.
The six major centers are Beijing, Shanghai, Tianjin, Guangzhouin southern Guangdong Province, Hefei in eastern Anhui Province, and Jinan in eastern Shandong Province, Leung said.
WFH would also help Chinese hemophilia organizations to improve their work capabilities, Leung said.
Chu Yuguang, director of Hemophilia Home, told Xinhua Thursday that his organization would continue to train volunteers and organize activities to promote awareness of the disease in Chinese society.
"To treat hemophilia is not just the work of hematologists," said Chu. "It also needs the efforts of orthopedists, psychologists and volunteers."
Chu said Hemophilia Home would invite some hemophilia patients and their families to communicate online Friday. On Sunday, Hemophilia Home would invite lawyers and volunteers to watch "Forever and Ever", a Hong Kong-made film about a hemophilia patient.
Hemophilia is a bleeding disorder whose patients suffer constant bleedings as their bodies fail to produce the protein needed for blood to clot. Hemophilia patients could live a normal life if they get medication and treatment early enough.
Estimates show that China now has 70,000 to 100,000 hemophilia patients, but just over 5,000 are diagnosed and registered.
The Alliance is a 10-year program launched by the Federation in 2003, aimed at helping developing countries improve their diagnoses and treatments of hemophilia and other bleeding diseases.
The Federation was founded in 1963 and set April 17 as the World Hemophilia Day in 1989. This year's theme is "Together, we care", which calls for comprehensive care from professional teams in different walks of life.
(Xinhua News Agency April 17, 2009)
