On this page you can find out about the activities we are engaged in and keep up to date on how our partners are working to improve access to care for people with haemophilia and allied bleeding disorders.
Our news covers all aspects of our work including the latest updates on our programmes, our campaigns and both local and global events.
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21 June 2018
Buenos Aires has well-established haemophilia care where people with bleeding disorders are able to flourish. But Jujuy presented a very different landscape. In the province of Jujuy, people with haemophilia were often completely isolated from care. In many cases, they had not even been properly diagnosed and were living in an environment without any resources or support.
19 June 2018
The project began with Doctor Susana Garbiero putting together a dedicated team of physicians, nurses, physiotherapists and social workers. They set out to further develop better care for people with haemophilia across the region of Southern Buenos Aires province.
11 June 2018
Myo Aung has severe haemophilia A with inhibitors. He started using crutches three years ago, aged 32, due to joint damage in both knees caused by repeated bleedings. The haematology unit, led by Mandalay’s only haematologist Dr Moe Hein, is located on the first floor of the hospital. There is no lift.
01 June 2018
Professor Mahlangu is director of the Haemophilia Comprehensive Care Centre in Johannesburg, South Africa which provides care and support for people with bleeding disorders. While he lives in South Africa, his impact has reached the entire continent.
04 April 2018
With very limited expertise in haemophilia at the beginning of 2016, there was an urgent need to build basic care and infrastructure to improve the lives of people with haemophilia.
05 April 2018
At the beginning of 2015, whilst there was some care provision for people with haemophilia living in Paraguay, the need to improve the organisation of this care was important. “Before this project, very little was talked about at an institutional level and almost nothing was organised to deal with haemophilia,” explained Mayda Tamara Yasychyn, NNHF project partner.
25 January 2018
The NNHF China 4 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 who in the past had to travel up to 12 hours to access care.
23 January 2018
Empowering women to become leaders and to activate regional chapters within the patient organisation in Malaysia was the aim of the NNHF Malaysia 3 project, which started in 2016 and was finalised at the end of 2017.
21 December 2017
In early 2013, the quality of haemophilia care across northern India varied between the 29 states. A lack of infrastructure made it difficult to provide coordinated multidisciplinary care. Through this NNHF project Prof Naresh Gupta together with his team from the @Maulana Azad Medical College improved quality of care and community engagement, by organising a multi-specialist training and awareness programme, reaching 3,150 participants.
08 December 2017
In 2013, people with haemophilia living in Shandong province received care at the Shandong Centre of Haemophilia Diagnosis and Treatment. This meant that some people in the province had to travel for more than 12 hours to receive care.
29 July 2017
In 2012, the NNHF entered into a partnership with South Africa’s Igazi Foundation to improve haemophilia care in the Eastern Cape province. This culminated in the strengthening of the haemophilia centre in Port Elizabeth and the creation of a network of trained healthcare professionals in the region.
07 June 2017
On 12 May, the first dedicated haemophilia clinic in Mombasa was officially inaugurated. The clinic, located in Coast Provincial Hospital is just one of the achievements of the NNHF Kenya 3 project team, whose engagement with NNHF began with the first Kenya project in 2012.
08 May 2017
NNHF engagement in Cambodia began in 2011, when Robyn Devenish was granted the NNHF Community Award. Robyn was together with Prof Chean Sophal a founding member of the Cambodian Haemophilia Association (CHA). The following year, lab technician Sem Samey undertook a NNHF fellowship to improve the quality of diagnosis at the National Paediatric Hospital in Phnom Penh.
03 May 2017
The project partner Kisakye Agnes together with the team at Haemophilia Federation of Uganda (HFU) demonstrated outstanding dedication, excellent project management and stakeholder involvement which led to sustainable impact.
03 May 2017
This award recognises Lic Marión Echenagucia’s exceptional voluntary engagement and outstanding contribution to developing and strengthening diagnosis of bleeding disorders in Venezuela and across Latin America.
Today, thanks to the joint efforts of a variety of local and international experts and engaged individuals, people in Malawi can receive haemophilia care at the Kamuzu Central Hospital in Llilongwe, where the first haemophilia clinic was officially inaugurated by the Ministry of Health in November 2016.
In 2015, Carmen Castro Abad, who has FVII deficiency, was hospitalised for several weeks following a bleed. Whilst Carmen eventually received the care she needed during this period, the process of accessing this care was not an easy one. As many healthcare professionals did not have specialist knowledge of bleeding disorders, gaining the correct referrals and care was a lengthy process.
From 23-25 September, 11 participants including nurses, haematologists and paediatricians came together in Bangkok for a musculoskeletal (MSK) care training session. The training is part of the NNHF Thailand 2 project, which aims to improve MSK care in Thailand.
Congratulations to the entire "Pakistan-5" Project team for winning the 2016 NNHF Project of the Year!
Led by Mr Masood Fareed Malik former President of the Pakistan Hemophilia Patients Welfare Society-NMO (PHPWS), this project has stood out as a shining example of a model NNHF project partner.
The 2nd AvanceHemos Haemophilia Leadership Forum (HLF) brought together haemophilia experts and actors from 12 Latin American countries in Lima, Peru, to discuss needs, challenges and plans to improve haemophilia care in their countries.
The second NNHF supported project in Latvia focuses on developing a registry to monitor patient data and health outcomes, to improve the quality of care and treatment provided, whilst the Latvia 1 project focused on regional capacity building.
In August 2016, the health authorities of Salta Province, Argentina and the Haemophilia Foundation of Salta announced the establishment of a haemophilia service at the local hospital, dedicated to diagnosis and multidisciplinary care of people with haemophilia living in the province.
The NNHF Brazil 4 project is based in the state of Para, in the north of the country. Known as the gateway to the Amazon, the state includes a number of islets. With the haemophilia patient population spread throughout these islets and a lack of transport infrastructure, access to adequate care is difficult.
In Malawi, it is expected that there are 1,800 people living with haemophilia. Of these, only 9 have been identified. This is because there are no facilities or trained staff in public hospitals to diagnose patients with haemophilia. With such a low number of identified patients, awareness of the condition is very low.
Many people with haemophilia across the world are affected by joint damage and arthropathy. In Brazil for example, 96% of those with severe haemophilia A live with severe joint damage due to a lack of musculo-skeletal (MSK) care.
NNHF programmes in China span 10 years and include 4 projects and 4 fellowships. One of these is the China 4 project in Shandong. The NNHF engagement with the Shandong team started with the China 2 project, which included training for the team at the Shandong Haemophilia Centre.
On 23 September 2015, the Haemophilia Comprehensive Care Centre (HCCC) at Kenyatta National Hospital in Nairobi was officially opened.
In 2015, Uganda was selected as the NNHF annual global fundraiser. Through donations made on World Haemophilia Day and beyond, a project is being funded to establish diagnosis and raise awareness of haemophilia throughout Uganda.
Find out about the latest completed programmes and ten years of NNHF impact creation.