Novo Nordisk Haemophilia Foundation (NNHF)
The Novo Nordisk Haemophilia Foundation (NNHF) was set up in 2005 as a response to the significant need to improve haemophilia treatment in the developing world, underlining Novo Nordisk’s social responsibility within haemophilia care.
Lack of access to haemophilia care is particularly daunting in the developing world, where this disease is not a priority. The World Federation of Hemophilia estimates that the disorder affects some 600,000 people globally, of whom an estimated two thirds live in developing countries. Haemophilia only affects males, and about half of the patients require treatment for bleeding several times a month. But today, only a small minority in the developed world – some 30,000 – receive proper treatment.
In many developing countries, young boys with haemophilia risk spontaneous and severe joint, muscle and internal bleedings with complications such as chronic joint disease and crippling. Without proper diagnosis and care they may die before the age of 15.
NNHF operates on an annual donation of approximately 10 million Danish kroner (2 million Swiss Francs) from Novo Nordisk.
To date, the Foundation supports 21 projects in South America, North Africa, Asia, the Middle East and Eastern Europe in partnership with healthcare authorities, medical professionals, NGOs and patient organisations. NNHF Projects focus on improving patient education, training healthcare professionals, establishing diagnostic facilities, running diagnostic programmes and starting patient registries.
It is estimated that the NNHF’s work impacts the lives of about 20,000 people with haemophilia in the countries where it has projects.
In 2007, the first NNHF projects were successfully concluded:
- In Venezuela, a two-year project with the goal of patient education and the establishment of 5 new patient association offices in remote parts of the country finished in October. During the project, more than 1800 patients were trained, along with parents and relatives. Training sessions were held with 10 nurses, 20 haematologists and 20 other specialists. In addition, 90 new patients were diagnosed and registered and 25 new patient leaders were educated. The 5 new chapters of the patient association were set up, bringing care and contact to expert help closer.
- In Uzbekistan, a first project has already been completed and is a good example of a successful partnership. Not only were healthcare professionals educated across the country in haemophilia diagnosis, care and treatment and more than 1,100 patients diagnosed and had their data entered into a newly installed haemophilia registry, but also a new haemophilia treatment centre was created in Tashkent at the Institute of Haematology. The treatment centre was funded by an engaged third party. Remarkably, the anonymous donor gave this enterprise about ten times the amount of the NNHF seed funding.
In 2007 NNHF initiated an award and a training fellowship programme for doctors. The first two doctors to receive a fellowship are from China and Iraq. They are expected to start their advanced trainings in 2008.
For more information, visit www.nnhf.org.
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