Novo Nordisk Haemophilia Foundation (NNHF)

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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.

Haemophilia is a neglected and nonprioritised disease in the developing world, where 75% of people with the condition live. Many of them suffer serious complications and premature death.

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.

By working to build a network of partners around the world who can share experiences and better practices, the Novo Nordisk Haemophilia Foundation (NNHF) helps to improve the care and treatment of patients with haemophilia and related bleeding disorders.

The activities the NNHF supports include capacity building, awareness creation
and disease impact reduction. The NNHF partners with healthcare professionals,
patient organisations and health ministries to carry out projects.

NNHF operates on an annual donation of approximately 10 million Danish kroner (2 million Swiss Francs) from Novo Nordisk.

In 2008, the Foundation supported 25 projects in 22 countries in South America, North Africa, South Africa, Asia, the Middle East and Eastern Europe. in partnership with healthcare authorities, medical professionals, NGOs and patient organisations. NNHF Projects focus on improving disease awareness and patient education, training healthcare professionals, establishing diagnostic facilities, running diagnostic programmes and starting patient registries.

It is estimated that the NNHF’s support impacts the lives of about 22,000 people with haemophilia in the countries where it has projects.

Below are examples of projects undertaken in 2008:

• Four fellowships were awarded in 2008 to physicians from China,
  Iraq and Thailand for further training in haemophilia diagnosis and bleeding disorder management.
• In Poland, haemophilia care was decentralised from two centres in Warsaw to a further 17 regional blood centres and a newly established group of haemophilia experts developed national treatment guidelines for haemophilia. Almost 500 medical professionals received training and a diagnostic campaign screened over 1,000 people who were then registered.
• In Venezuela, the NNHF supported the expansion of haemophilia care into rural areas where it was largely unavailable. A multidisciplinary team focused on patient and physician education and improving cooperation between patient associations and their local hospitals, and about 1,300 patients and their families benefited. The programme covered the entire country, increased the diagnosis of known haemophilia patients from around 1,300 to more than 1,700 and trained 250 healthcare professionals. The result is a stronger haemophilia care system, increased awareness and the formation of a national haemophilia network.
• The NNHF training fellowship programme initiated in 2007 was granted to another two recipients in China and Thailand in 2008. They are expected to start their advanced trainings in 2009.

For more information, visit www.nnhf.org.

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