Haemophilia care in China: achievements of a decade of World Federation of Hemophilia treatment centre twinning activities

Abstract

The World Federation of Hemophilia (WFH) began its involvement in China in 1993, supporting Chinese haemophilia centre twinning programmes in 1997. Although only three Chinese centres were in a twinning relationship (Tianjin/Calgary 1997-2004, Guangzhou/Ottawa 2000-2006, Shanghai/Ottawa, Calgary 2002-2007), WFH helped establish a collaborative network of six Chinese centres (Tianjin, Guangzhou, Shanghai, Beijing, Hefei, Jinan) in 2004. These network centres, in collaboration with haemophilia patients, shared and coordinated several successful ongoing priority projects (Registry, Nursing, Laboratory Diagnosis, Physiotherapy and Prophylaxis). A number of physicians, nurses and technologists have received WFH fellowships for training internationally. They are becoming haemophilia-care leaders and are key personnel working towards comprehensive care in China. National and regional workshops/conferences in addition to educational material development have been successful in reaching out to healthcare professionals and persons with haemophilia across the country. Key elements of success include the enthusiasm and commitment of the Chinese professionals and patient leaders in their desire to advance haemophilia care and their commitment to work collaboratively in a coordinated manner. They are beginning to gain national and international recognition and are launching outreach education and care programmes to cover other parts of China. WFH is now transitioning support in China from a twinning program to country programme (Global Alliance for Progress). Haemophilia work in China is still in the beginning, but there is now a solid foundation for future progress.