2022: A year that catalysed change

Throughout 2022, our partnerships have been instrumental in breaking down barriers and empowering individuals and communities to work together towards a common goal. Through these efforts to catalyse change, our programmes can deliver more.

We see this in the number of people reached: 50,600 people benefitted from NNHF programmes in 2022. The scope of these benefits is wide, for some it could mean an 18-hour reduction in the time they have to travel to receive care. Others may now be able to self-infuse at home. For thousands, it is a confirmed diagnosis of their bleeding disorder, meaning they can access the appropriate care for the first time.

And what is our role in this? We are the ones putting our partners at the forefront. As a catalyst for change we can inspire, we can introduce new ideas, and we can empower. But it is our partners who do. They are the ones leading their communities to address their most pressing needs in haemophilia care, whether this is establishing labs and clinics, reducing social stigma or influencing government policy.

That is why understanding our partners’ needs, the context in which they work, and how they can convert their plans into action and ultimately, impact, is key. The Grantee Perception Survey is one of the ways we can assess how we are doing in this area. Run by the Center for Effective Philanthropy (CEP), the survey seeks feedback from our grantees and compares results across a dataset gathered from over 350 funders. We were humbled by the results, with our partners especially positive about our impact on their communities and organisations.

There are of course areas that our partners would like us to work on. With the travel restrictions imposed by the COVID-19 pandemic, they want us to ensure that post-pandemic, we re-establish the close connections with them and communities they serve, whilst also ensuring we travel efficiently to minimise our environmental impact.

Our partners also want to achieve the right balance between demonstrating impact and the reporting mechanisms that this requires. By reviewing our impact framework and identifying which indicators really demonstrate positive change, we are working towards streamlining our monitoring and reporting process and with that reducing our partners’ workload.

Finally, catalysing change means expanding our partner network so that more actors can be mobilised to facilitate this change. In 2022, we welcomed four new countries into our project portfolio, and saw great strides in our partnerships with Fondation Pierre Fabre and Novo Nordisk Foundation through project activities in Burkina Faso, Guinea, Tanzania and Kenya. 2022 was also the year that Ramathibodi Hospital in Bangkok, Thailand became the first centre to receive equipment through our partnership with the International Society on Haemostasis and Thrombosis (ISTH). And finally, 2022 marked the 10th anniversary of the first NNHF sponsored labs enrolling in the World Federation of Hemophilia (WFH) International External Quality Assurance Scheme (IEQAS).

As we move into 2023, we will continue to focus on those who matter most: our beneficiaries. Whilst we expand our network, explore new partnerships and adapt to our revised impact framework, we will never lose sight of our vision, that people with haemophilia and allied disorders receive care and treatment, wherever they live.

Ludovic Helfgott, NNHF Council president
Denise Braendgaard, NNHF General manager

NNHF Impact report

Key activities

Care facilities

73

centres established or strengthened

Skilled experts

2,500

healthcare professionals trained

Diagnosis
facilities

13,500

re-tested or newly diagnosed

Key outcomes

Reduced
travel time

up to 18-hours

reduction in travel time to care

Increased
diagnosis
rate

up to 117%

increase in the number of people diagnosed

Quality of care and diagnosis

39

Countries reported improved quality
of care and/or diagnosis

Case studies

Mauritius

Improved access to treatment and preventive care

In 2019, haemophilia treatment was only available in hospitals. The onset of the COVID-19 pandemic alongside the Haemophilia Association of Mauritius’ (HAM) advocacy efforts changed this. The government not only approved home treatment but also named HAM as the official self-infusion training partner. At the project’s completion in 2022, 50% of people with severe haemophilia were receiving home treatment.

 

Sri Lanka

An exceptional increase in diagnosis rate

A two-pronged approach was adopted by the Haemophilia Association of Sri Lanka to improve diagnosis. First, strengthening labs in three regional hospitals. Next, a targeted media campaign to raise awareness of the symptoms and encourage those experiencing them to get screened. The result? An impressive 47% increase in the diagnosis rate, far surpassing their original goal.

 

Kenya and Tanzania

Changing the landscape of bleeding and blood disorders care

On their journey to achieving national comprehensive blood disorders policies, the teams from the Kenya-Tanzania joint project are changing the landscape of bleeding and blood disorders care. By establishing and upgrading 11 clinics across both countries as of the end of 2022 – described as ‘one-stop shops’ for care by mother Eunice Bella Aluoch – travel time to receive care has reduced by up to 4.5 hours in Kenya and almost 18 in Tanzania. The project, co-funded by the Novo Nordisk Foundation, demonstrates the power of partnerships across borders, health conditions, hospitals and governments, with the project’s many achievements also including a 70% increase in Tanzania’s diagnosis rate, and the endorsement of national treatment guidelines in Kenya.

 

Impact Report Methodology

Our Programmes

Explore all programmes

Meet our expert volunteers

We rely on a global network of expert volunteers to support our projects through training and knowledge sharing, both onsite and online. In 2022, we worked with volunteers from 12 countries spanning 5 continents.

Find out more

Meet our expert volunteers

We rely on a global network of expert volunteers to support our projects through training and knowledge sharing, both onsite and online. In 2022, we worked with volunteers from 12 countries spanning 5 continents.

Find out more

Leveraging partnerships to maximise impact

In 2022, we continued our partnerships with the Fondation Pierre Fabre, the International Society on Thrombosis and Haemostasis (ISTH), the Novo Nordisk Foundation and the World Federation of Hemophilia (WFH). Each of these partnerships leverages on synergies that will increase and accelerate access to care and diagnosis for people living with bleeding and blood disorders.

Find out more

Leveraging partnerships to maximise impact

In 2022, we continued our partnerships with the Fondation Pierre Fabre, the International Society on Thrombosis and Haemostasis (ISTH), the Novo Nordisk Foundation and the World Federation of Hemophilia (WFH). Each of these partnerships leverages on synergies that will increase and accelerate access to care and diagnosis for people living with bleeding and blood disorders.

Find out more

What do our grantees think of us?

In 2022, the NNHF participated for the first time in the Grantee Perception Report, conducted by the Center for Effective Philanthropy (CEP). We are using the results to continue building on our strengths whilst striving to improve in specific areas identified by our partners.

Find out more

What do our grantees think of us?

In 2022, the NNHF participated for the first time in the Grantee Perception Report, conducted by the Center for Effective Philanthropy (CEP). We are using the results to continue building on our strengths whilst striving to improve in specific areas identified by our partners.

Find out more

Podcast highlights

In 2022, our podcast guests included patient organisation leaders, a haemophilia nurse specialist and NNHF volunteer, and a Senegalese professor who is contributing to changing the landscape of blood disorders care in Africa.

Impacting care
Impacting care
Year in review 2022
/

This special compilation episode presents you with the highlights from these guests’ episodes in a bitesize format.

Awards

Announcing our NNHF Project of the Year 2022

The Novo Nordisk Haemophilia Foundation is pleased to announce that the Project of the Year award for 2022 is awarded to our Romania project team. The team, from the Romanian Society of Haematology and from “Iuliu Hatieganu” University of Medicine and Pharmacy in Cluj-Napoca, led by clinical haematologist Dr Ciprian Tomuleasa demonstrated outstanding dedication and project management in achieving sustainable impact for people living with haemophilia and allied disorders in Transylvania, and across the country.

Read more

NNHF Community Award 2022:
Recognising an inspirational leader and patient advocate in Honduras

The recipient of the Novo Nordisk Haemophilia Foundation (NNHF) Community Award 2022 is Maria del Carmen Agurcia, President of the Honduran Haemophilia Society (Sociedad Hondureña de Hemofilia – SHH) from 2000 to 2013. She played a key role in strengthening this organisation on a national scale as well as implementing the first project supported by NNHF in the country, which was selected as the NNHF Project of the Year in 2012.

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Financial statements 2022

Impact Report 2022