The Novo Nordisk Haemophilia Foundation: Teaming up to reach out

Welcome back to the Changing Haemophilia® blog! This month we are sharing stories from the Novo Nordisk Haemophilia Foundation (NNHF) and its project partners, who work together to improve access to haemophilia care in developing and emerging countries.

 


Published 22 November 2018 | 3 min read
 


Haemophilia affects approximately 1 in 10,000 people.¹ Yet, only 25% of the global patient population has been identified — and many are not receiving adequate care.¹ ²

We at Novo Nordisk are proud to support the NNHF and its vision that “all people with haemophilia or allied bleeding disorders receive care and treatment wherever they live”. Since 2005 the NNHF has supported 237 programmes and 18 awards, creating sustainable impact in 70 countries.² ³

NNHF’s vision: all people with haemophilia or allied bleeding disorders should receive care and treatment wherever they live

At the WFH Congress, the 2018 annual Community Award was presented to Professor Johnny Mahlangu, for his outstanding voluntary engagement benefitting people with haemophilia and allied bleeding disorders in the developing world. Prof Mahlangu has been sharing expertise and building partnerships for many years, putting people with bleeding disorders at the centre of his work.

Professor Johnny Mahlangu receiving the 2018 annual Community Award

"It is indeed a pleasure for many of us in Africa to work with the NNHF and people with haemophilia in advancing the course of care for inherited bleeding disorders in Africa"

Professor Mahlangu

The Project of the Year award 2018 winner has been announced as the fourth project supported by the Novo Nordisk Haemophilia Foundation in China. The project is an outstanding example of how a strong network of dedicated experts can generate incredible impact — reaching out to people with haemophilia living in urban or rural areas that previously had to travel up to 5 hours to access care.

In April 2018, the first NNHF Leadership Training for partners and selected members of the African haemophilia community took place in Cairo. The one-week programme provided skills to drive change and inspire the next generation of leaders.

NNHF Leadership Training - participants sitting at table talking and working with a project

"All haemophilia leaders in Africa should take part of this training! It is highly educational - a good mix og theoretical and practical workshops."

Doctor Kibet, Kenya

Throughout this year, the NNHF has teamed up with volunteers and experts in various countries to improve haemophilia care. In Pará, Brazil, the project team impacted the lives of many people with haemophilia by bringing care closer. Some previously had a 10–13 hour boat journey.

In Myanmar, only 400 of 5,500 expected people with haemophilia have been diagnosed, and differences in access to care between the North and South are vast. Since the beginning of 2018 Dr Moe Hein and other healthcare professionals from Mandalay have teamed up with international experts, the patient organisation and the NNHF to improve expertise, care and diagnosis, establish a treatment centre in Mandalay and decentralise basic care.

Haemophilia care centre in Africa - with red and white balloons

In Kenya, a need for a wider reach of treatment was identified — some people with haemophilia had to travel up to 9 hours to receive care. The NNHF and the project team worked together to establish a treatment centre in Mombasa and expand the existing centre in Nairobi.

Through the initiatives and projects supported by the NNHF this year, the vision of equal care and treatment for all with haemophilia only draws closer.

Find out more about the NNHF here: www.nnhf.org


References

  1. NNHF Activity Report 2017. Available at: 
    http://www.nnhf.org/content/dam/Nnhf/AFFILIATE/www-nnhf-org/Home/Documents%20and%20Films/NNHF-AR17/NNHF_AR17_Final_web.pdf (accessed Sep 2018).
  2. The Novo Nordisk Haemophilia Foundation is striving for access to care. Available at:
    http://www.nnhf.org/about_us.html (accessed Sep 2018).
  3. NNHF programme activity updates. Available at 
    http://www.nnhf.org/documents_and_films/programme_updates.html (accessed Sep 2018).