2020: A year of remarkable resilience

The year 2020 will be remembered as a time of unprecedented challenge around the world. The Novo Nordisk Haemophilia Foundation (NNHF) is especially proud to have seen our partners and the global bleeding disorders community demonstrate remarkable resilience in a difficult year. In this year’s highlights report, we celebrate some of their outstanding achievements. Together, we are moving closer to realising our vision: ‘All people with haemophilia and allied bleeding disorders receive adequate care and treatment wherever they live’.

2020 also marked 15 years since the NNHF was founded. Since its creation in 2005, the organisation has evolved and grown along with our strategic ambitions to generate more impact together with our partners.

One of the past year’s landmark initiatives in line with this approach was the successful launch of the Kenya-Tanzania joint project. The project is designed to leverage resources for haemophilia so as to benefit people with sickle cell disease in both countries. Thanks to a grant from the Novo Nordisk Foundation, this joint project will accelerate access to care through capacity building, advocacy and awareness.

I would also like to congratulate this year’s NNHF award winners. Our Community Award recognised a highly motivated community leader in Pakistan, Mr Masood Fareed Malik, President of the Hemophilia Foundation-Pakistan (HFP), who has been instrumental in unifying and empowering the patient organisation across its five regional chapters while closely collaborating with healthcare professionals and people with haemophilia for 20 years. The NNHF Project of the Year award was attributed to the Chile 3 project team, recognising the team’s excellent project management and dedication as well as their innovative and collaborative approach to creating an online registry and a mobile app focused on musculoskeletal (MSK) health.

Resilience is the capacity to recover quickly from difficulties and to adapt to challenges as they arise. Strengthened by the obstacles overcome during the past year, our international volunteers and partners in the countries are ready to meet the challenges ahead as we continue to adapt to the ongoing coronavirus pandemic.

In the upcoming years we will further focus on strengthening our network, fostering advocacy and expanding funding in order to increase support and benefit more people living with haemophilia and allied bleeding disorders.

I am honoured to lead the NNHF as we embark upon this next phase of our journey to achieve our vision.

Ludovic Helfgott
NNHF Council president

Going above and beyond to impact care

Extraordinary. Exceptional. Unprecedented. These words are often used to describe the challenges of the past year’s global health crisis. They apply equally well to our partners, volunteers and people living with bleeding disorders around the world, as well as to our organisation.

I would like to pay tribute to the passion and ongoing commitment of our partners in the countries, who continuously strive to impact care despite the challenges. Throughout 2020, NNHF project teams went above and beyond to adapt their activities to the ‘new normal’. This meant shifting priorities, advocating through new channels, adapting training materials to the virtual environment and, in some cases, going the extra distance to ensure that people living with haemophilia and those who care for them were protected with face masks and hand sanitisers, or even ensuring that they had food on their table. With the agreement of the NNHF Council, we were able to support our partners and their communities by allocating an exceptional donation to offer relief in unprecedented ways throughout the pandemic.

2020 also marked our 15-year anniversary as a foundation dedicated to improving care and treatment of haemophilia and bleeding disorders. I was especially proud to share 15 inspiring stories about the impact of individuals associated with NNHF projects in facilitating better care for people with haemophilia, wherever they live.

I invite you to discover some of the inspiring ways in which our teams around the world have been working to improve access to care over the past year. In Vietnam, for example, where people with haemophilia are already beginning to benefit from shortened travel times to receive treatment thanks to ten new satellite centres designed around a complete care model. In Mozambique, where the project team is using every available channel to raise awareness and empower people with haemophilia on the management of the condition. In Mexico, where going virtual has transformed the way knowledge is shared between healthcare professionals and people with bleeding disorders.

Finally, I would like to express my heartfelt gratitude to all of the dedicated members of our international community who go above and beyond in so many ways to improve the lives of people with bleeding disorders. I would like also to thank, in the name of the NNHF, Jesper Brandgaard, former Council President, and Jan Hoff former Council member, for the precious guidance provided to our Foundation’s team and partners in 2020 and over the course of their respective mandate.

Together with the NNHF Council, our partners and volunteers, we will seek new ways to continue impacting care, together.

Denise Braendgaard
NNHF General manager

NNHF Impact assessment results

Capacity building

Skilled experts
45799

healthcare professionals trained1

Care facilities
684

centres established or strengthened1

360

of these are satellite and primary care sites1

Organisation of care delivery

National care guidelines

updated, printed or distributed through NNHF projects by 49% of partners

Diagnosis and registry

Diagnosis expertise and staff
3350

lab technicians trained1

Diagnosis facilities
318

labs established or strengthened1

Quality data
28600

patients have been re-tested or newly diagnosed1

41

countries developed or improved registries1

Education and empowerment

Empowered people with haemophilia
50900

people with haemophilia and family members educated1

Strong patient organisation

Empowered leaders within the patient organisation

say 77% of partners
Engaged authorities and community network

Members active in engaging with authorities

say 88% of partners

Impact Assessment Methodology

Our Programmes

Explore all programmes

Growing stronger with COVID-19

An online drawing event for young people with haemophilia in West Bengal, training sessions broadcast live on social channels in Mexico, specific emergency donations for purchases of protective equipment and essential supplies in 22 countries: how supporting each other in troubled times has helped our partners and strengthened our community.

Find out more

Growing stronger with COVID-19

An online drawing event for young people with haemophilia in West Bengal, training sessions broadcast live on social channels in Mexico, specific emergency donations for purchases of protective equipment and essential supplies in 22 countries: how supporting each other in troubled times has helped our partners and strengthened our community.

Find out more

Awards

NNHF Project of the year award 2020: Chile 3

Chile’s Dr Verónica Soto had a vision for haemophilia care in the country, one that would mean all people with haemophilia had an accurate diagnosis, and received tailored care based on long-term monitoring of their condition and joint status. With the completion of the NNHF Chile 3 project, Dr Soto is part of a network that has brought the country closer to that vision.

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NNHF Community award 2020:
Mr Masood Fareed Malik

Mr Masood Fareed Malik has made a difference to thousands of people with bleeding disorders in a country where until recently it was only possible to get proper treatment and care in major cities. As a person with haemophilia A, he knows what it is to live with severe factor VIII deficiency.

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Financial statements 2020

Impact Assessment 2020