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April 30th, 2004 Octapharma Provides Gift of Haemophilia Treatment to Nepal Octapharma is aware of the tragic fact that most people with haemophilia around the world have little or no access to modern medicine or well designed treatment programs including prophylaxis. For this reason, Octapharma Sweden has contributed to the activities of the Swedish Haemophilia Society in their participation in the Haemophilia Organization Twinning (HOT) program of the World Federation of Haemophilia (WFH). The WFH has two twinning programs, one for haemophilia treatment centres and one for haemophilia organizations (HOT). Twinning refers to a formal, two-way collaboration or partnership between two haemophilia treatment centres or two societies. The HOT program helps emerging haemophilia organizations in developing countries establish partnerships with knowledgeable and experienced societies in developed countries. Twinning establishes a link among the two that facilitates shared knowledge in areas of patient education, outreach, fundraising, and all aspects of operating a successful haemophilia organization.
Dr. Ranjan P. Singh, the founder of the Nepal Haemophilia Society recently visited Sweden where he discussed developments in the ongoing collaboration with Swedish authorities and associations. He explained that humanitarian aid money given to Nepal is mainly used to improve the quality of life for people with haemophilia from the provision of education and in lobbying the government to allocate money for a permanent supply of coagulation factors. Currently, the government maintains only a minimal supply of coagulation factors for emergency situations, scarcely enough to treat all episodes of acute bleeding in the haemophilia population throughout Nepal. For administrative and bureaucratic reasons, money donated by organizations in Sweden to organizations in Nepal can not be used to buy factor concentrates. Only the government of Nepal is authorized to purchase coagulation factors.
In addition to the HOT program, the treatment centre twinning program plays a critical role in changing and improving treatment. Through coaching, training, and transfer of expertise, twinning can improve diagnosis and care delivery, and minimize complications associated with haemophilia, ultimately leading to improved quality of life for patients. Haemophilia treatment centres in Stockholm and Malmö twin with centres in Estonia and Lithuania. Both treatment centre and organization twinning partnerships make an extraordinary contribution to improving haemophilia care; from the level of the individual patient to political action in each country and cross-border organizational initiatives. In this way, global awareness of the realities for people with haemophilia continues to increase. For more information about these programs, please contact the WFH Twinning Program Coordinator, Karine Frisou. Additionally, the following program guides are available on the WFH website: (Please note that clicking on this link will take you outside of the Octapharma web site) 1. Improving Care Beyond our Borders: a Twinning Guide for Hemophilia Treatment Centres. 2. Reaching Beyond our Borders: a Twinning Guide for Hemophilia Organizations. © Octapharma AG, 2004 |
