Novo Nordisk Haemophilia Foundation broadens mandate to include sickle cell disease and thalassemia

The Novo Nordisk Haemophilia Foundation (NNHF) has expanded its mandate beyond haemophilia to formally include haemoglobinopathies, sickle cell disease, and thalassaemia, prompting a name change to the Novo Nordisk Haemophilia and Hemoglobinopathies Foundation.

The shift, the Foundation explained, recognises the clinical synergies across these conditions and the shared barriers patients face.

It also signals a deeper commitment to Africa, where NNHF already supports programmes in more than 28 countries.

For the past 20 years, NNHF has worked to strengthen haemophilia care in low- and middle-income countries.

As the burden of sickle cell disease continues to rise, particularly in Africa, the Foundation’s new direction seeks to empower national systems to lead their own progress.

According to the World Health Organization, Africa sees between 300,000 and 400,000 births of children with sickle cell disease every year, nearly two-thirds of the global burden.

Opening the event, Natasha Honan, Senior Advocacy & Communications Manager at NNHF, stressed the scale of the Foundation’s ambition.

“We are now positioning ourselves to improve care for more than 10 million people who are affected, most of them in low- and middle-income countries,” she said, noting that Africa remains central to the Foundation’s mission.

She added that NNHF’s strategy is rooted in self-sufficiency, explaining that “countries must be able to build and sustain their own systems of care, and our role is to enable that journey through integrated, long-term support.”

Honan also highlighted the Foundation’s expanded resources.

With fresh support from the Novo Nordisk Foundation and continued backing from Novo Nordisk, NNHF plans to reach 100,000 beneficiaries by 2030.

“We are scaling up in a way that is guided by evidence,” she said.

“That means stronger diagnostic systems, better-trained health workers, more robust data, and clearer policy alignment. All of these are essential if care is to stay locally led and sustainable.”

Speaking on behalf of the Novo Nordisk Foundation, Emma Muraguri explained how the Foundation’s evolving global health strategy complements NNHF’s new direction.

“Our work has grown far beyond our origins in insulin production,” she said.

“We now support research and programmes in cardiometabolic diseases, food and agriculture systems, and antimicrobial resistance technologies. This broader footprint allows us to bring stronger, more coordinated support to regions like East Africa.”

Muraguri pointed to ongoing programmes in East Africa and India, the establishment of centres of excellence, and improvements in diagnostics.

“What we look for now is scalability,” she added, “and the ability of partners to adapt and codify their work so that change becomes systemic, not isolated.”

From the Ministry of Health, Kenya, Dr Yvette Kisaka reaffirmed the government’s commitment to strengthening national systems for haemophilia and sickle cell disease.

“We are updating our clinical guidelines so that patients receive consistent, high-quality care,” she said.

She also highlighted Kenya’s infant screening pilot in five counties, noting that early detection is critical.

“We cannot talk about meaningful progress without improving access to essential medicines like hydroxyurea and investing in the training of our health workforce,” she added.

Dr Kisaka stressed that the Ministry sees partnerships as essential: “No programme can stand alone. Sustainability depends on collaboration, alignment, and shared responsibility.”

Representing the Africa CDC, Dr Adelard Kakunze outlined the continental framework guiding haemoglobinopathy care.

“Our plan rests on eight strategic pillars—governance, prevention, integrated systems, equitable access, human resources, psychosocial support, financing, and data surveillance,” he said.

He highlighted the ambitious target of 70% newborn screening by 2035, adding: “We must expand the workforce and strengthen data systems if we are to diagnose early, treat appropriately, and track progress at scale.”

From the World Health Organisation (WHO) Kenya, Dr Adiele Oyenze emphasised the urgency of improving care for haemoglobinopathies.

“Africa continues to carry the highest burden, with between 300,000 and 400,000 children born with sickle cell disease every year,” he said.

“What is most painful is that many of these children die before the age of five, even though we have affordable, effective interventions.”

He also noted the silent challenge of haemophilia underdiagnosis: “Only nine percent of cases are identified. That should concern all of us. Without stronger diagnostics, we cannot plan, we cannot manage, and we certainly cannot achieve equity.”

Dr Oyenze added that progress depends on “cross-country collaboration, investment in laboratory systems, and consistent access to essential medicines.”

The event brought together participants from English-, Portuguese-, and French-speaking Africa, including patient groups, caregivers, government officials, and health professionals, to begin charting a coordinated path toward stronger, locally led systems of care.

As NNHF broadens its mandate to include sickle cell disease and thalassaemia, Africa’s role becomes even more central. Despite the continent’s disproportionate burden, haemophilia remains widely underdiagnosed and underserved.

NNHF’s expanded strategy reflects this reality.

As the Foundation explained, its goal is “to achieve self-sufficiency for haemophilia care in at least fifteen countries, most of them here in Africa, while exploring integrated approaches for the countries most affected by sickle cell disease.”

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