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Activities for celebrating World Hemophilia Day in China
HHC     2003-7-23 22:58:58

Every year, April 17th is the World Hemophilia Day. The theme of this year is the 40th anniversary of the WFH. For celebrating this Day, especially for improving the awareness of hemophilia in China, appealing the public and government to pay more attention to the community of hemophilia, and enhancing the communication and relationship between patients and physicians, the Hemophilia Home of China (HHC) organized some activities in Beijing, Tianjin and Guizhou province. The gatherings in Shanghai and Guangzhou were cancelled because S.A.R.S.

The meeting in Beijing was held on April 15th. The participants included thirty patients and families, one governor, four doctors, seven volunteers and some from mass media and pharmaceutics. Mr. Yuguang Chu, the president of HHC, introduced the WFH’s forty years of progress in global hemophilia care. The director of the Social Work Association of China, Mr. Jianfei Ma, gave a short lecture and brought forward an idea to establish hemophilia foundation in China. Afterward, Dr. Yongqiang Zhao from Peking Union Medical College Hospital, Dr. Aiguo Song from Fuxing Hospital of Capital University of Medicine, Dr. Runhui Wu from Beijing Children Hospital and Dr. Yang Guo from Beijing People’s Hospital, made speeches on hemophilia treatment and answered the patients’ questions. Shanghai RAAS Blood Products Co., Ltd sponsored this meeting. China Central Television (CCTV) and Beijing TV (BTV) reported it.

The celebrating meeting in Tianjin and Guizhou were both held just on the Hemophilia Day. In Tianjing, the location was selected at Tianjin Institute of Hematology & Blood Diseases Hospital. About forty patients and families attended this significant meeting and learned more knowledge from Dr. Renchi Yang’s lecture on hemophilia treatment and care. The patients’ leader of Tianjin declared a letter to their mayor. Almost all of the patients signed on the letter. The representation of Hualan Biological Engineering Co., Ltd., which was the sponsor of the activity, explained the safety of blood products and replied some questions of patients. The president and general secretary (Mr. Tao Guan) of HHC were invited to attend this meeting and gave lectures on WFH’s history and self-infusion at home. Local TV and newspapers reported it at same day.

It’s first time for the patients lived in Guizhou Province to attend such a meeting on hemophilia. There were approximately forty patients took part in this meeting excitedly. Some officers of local government, such as People’s government, handicapped association, the communist youth league, were invited to attend the meeting. The leader of local patients’ group and doctor made speeches on WFH’s history and the situation of life and treatment of patients in Guizhou province. The patients exchanged experiences of fighting with disease each other. Seven local medias covered the news story.

Via the series of activities, more and more people known the WFH. These activities also educated the public and made the government thinking much of hemophilia care in China. We believe that the hemophilia care in China must be improved with the efforts of all aspects!

 


 
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Bogdan: Best wishes for the hemophiliacs in China. Enough factor for every one and a happy new year. Bogdan Poland (severe hemofilia A)
phucnv@pmail.vnn.vn: Dear, China Hemophilia
I know factorconcentrate is produced in China.
Would you please tell me
- How many unit (IU) in each vial of FVIII and FIX 
- Price of Factor 8
- Price of Factor 9

How to buy this type of product, and where to buy in your country?
Thank you

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