Novo Nordisk Haemophilia & Haemoglobinopathies Foundation

20/08/2026

𝐇𝐨𝐰 𝐜𝐚𝐧 𝐝𝐚𝐭𝐚 𝐡𝐞𝐥𝐩 𝐲𝐨𝐮 𝐚𝐜𝐡𝐢𝐞𝐯𝐞 𝐲𝐨𝐮𝐫 𝐚𝐝𝐯𝐨𝐜𝐚𝐜𝐲 𝐠𝐨𝐚𝐥𝐬?

At our 𝐨𝐧𝐥𝐢𝐧𝐞 𝐏𝐚𝐫𝐭𝐧𝐞𝐫 𝐇𝐢𝐠𝐡𝐥𝐢𝐠𝐡𝐭𝐬 𝐌𝐞𝐞𝐭𝐢𝐧𝐠, partners from across the Novo Nordisk Haemophilia & Haemoglobinopathies Foundation (NNHF) explored how 𝐝𝐚𝐭𝐚-𝐝𝐫𝐢𝐯𝐞𝐧 𝐚𝐝𝐯𝐨𝐜𝐚𝐜𝐲 can help make local realities visible and strengthen the case for more sustainable care.

Two 𝐍𝐇𝐅-𝐬𝐮𝐩𝐩𝐨𝐫𝐭𝐞𝐝 activities from 𝐊𝐞𝐧𝐲𝐚 & 𝐔𝐠𝐚𝐧𝐝𝐚 and 𝐈𝐧𝐝𝐢𝐚 highlighted how evidence on economic burden, quality of life and financial protection can support advocacy, policy dialogue and action.

A warm thank you to our speakers, 𝐃𝐫 𝐑𝐢𝐜𝐡𝐚𝐫𝐝 𝐒𝐚𝐧𝐲𝐚 and 𝐃𝐫 𝐌 𝐉𝐨𝐬𝐞𝐩𝐡 𝐉𝐨𝐡𝐧, and to all partners who joined online, asked thoughtful questions and contributed to an interactive exchange.

📸 These images capture just a few of the many participants from a call that brought together more than 𝟕𝟎 𝐩𝐞𝐨𝐩𝐥𝐞 across NNHF’s global community.

Curious how our programmes are strengthening care through local partnerships and data-driven advocacy? Find out more: www.nnhf.org

12/08/2026

What does progress look like?

𝗣𝗿𝗼𝗴𝗿𝗲𝘀𝘀 𝘁𝗮𝗸𝗲𝘀 𝗺𝗮𝗻𝘆 𝗳𝗼𝗿𝗺𝘀: 𝗶𝗺𝗽𝗿𝗼𝘃𝗲𝗱 𝗱𝗶𝗮𝗴𝗻𝗼𝘀𝗶𝘀, 𝘀𝘁𝗿𝗼𝗻𝗴𝗲𝗿 𝗰𝗮𝗿𝗲 𝘀𝘆𝘀𝘁𝗲𝗺𝘀, 𝗮𝗻𝗱 𝗸𝗻𝗼𝘄𝗹𝗲𝗱𝗴𝗲 𝗮𝗻𝗱 𝗲𝘅𝗽𝗲𝗿𝘁𝗶𝘀𝗲 𝘀𝗵𝗮𝗿𝗲𝗱 𝗮𝗰𝗿𝗼𝘀𝘀 𝗯𝗼𝗿𝗱𝗲𝗿𝘀.

A few snapshots from the first half of 2026:

🔎 Mozambique: More than 180 healthcare professionals, including laboratory technicians, received haemophilia training, helping strengthen diagnosis, referral pathways and access to multidisciplinary care closer to home for people living with haemophilia.

🤝 Nigeria: 74 stakeholders came together through the Inherited Blood Disorders Leadership Forum, leading to a new Technical Working Group.

🌍 Across regions: Partners in East Africa, West Francophone Africa, Central America and the Caribbean, Portuguese-speaking Africa and the Vanilla Islands are connecting within their regions to share expertise and strengthen approaches to care.

And these examples are only a snapshot. Explore the First-half 2026 Programme Report: https://nnhf.org/first-half-of-2026/

27/07/2026

🔎When progress in one country helps move a region forward👏

With support from , representatives from Mauritius, Madagascar, Comoros and Seychelles came together for a workshop to explore how regional collaboration can strengthen care for people living with and across the Vanilla Islands.

📊 Mauritius offers one example of progress, with an active patient organisation, a 76% diagnosis rate for haemophilia and strong country ownership reflected in the Ministry of Health’s commitment to treatment.

🤝 Mauritius and Madagascar committed to supporting Comoros and Seychelles through knowledge sharing, healthcare professional training and the development of patient organisations.

🩸 Participants also identified shared priorities, including strengthening referral systems, exploring appropriate screening approaches for haemoglobinopathies, building patient registries and ensuring sustainable access to treatment.

🚀 The next ambition is to establish an Indian Ocean Coalition and a regional technical committee to support continued collaboration.

🔗 Discover how NNHF supports locally led programmes:
https://nnhf.org/programmes/

17/07/2026

Not a wrap-up. A continuation of shared work.

At , the team met with partners, expert volunteers, clinicians, researchers and new collaborators from South and Central America, Europe, Africa and Asia.

Across meetings, booth conversations and exchanges, one message came through clearly: improving care for people living with haemophilia and haemoglobinopathies depends on what we build together, across countries, disciplines and systems.

We exchanged learning.
We listened to local priorities.
We explored new ideas for capacity building, diagnosis, regional collaboration and access to care.
And we left with new connections that can help move shared ambitions into action.

These photos are only a few impressions from a week shaped by people, partnerships and purpose.

Thank you to everyone who took the time to meet with us, exchange experience and explore how we can continue .

We leave with renewed energy, stronger connections and clear momentum to keep building partnerships that support sustainable access to care.

For follow-up discussions, please reach out to [email protected].

International Society on Thrombosis and Haemostasis (ISTH)

14/07/2026

𝗦𝘁𝗿𝗲𝗻𝗴𝘁𝗵𝗲𝗻𝗶𝗻𝗴 𝗿𝗲𝗴𝗶𝗼𝗻𝗮𝗹 𝗹𝗲𝗮𝗿𝗻𝗶𝗻𝗴 𝗳𝗼𝗿 𝗵𝗮𝗲𝗺𝗼𝗽𝗵𝗶𝗹𝗶𝗮 𝗮𝗻𝗱 𝘀𝗶𝗰𝗸𝗹𝗲 𝗰𝗲𝗹𝗹 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗰𝗮𝗿𝗲 𝗶𝗻 𝘁𝗵𝗲 𝗖𝗮𝗿𝗶𝗯𝗯𝗲𝗮𝗻.

💡Building on -supported projects in Jamaica and the Dominican Republic, where partners have worked to strengthen haemophilia care, NNHF is supporting efforts to explore a stronger regional Caribbean coalition.

🤝An NNHF-hosted workshop brought together medical experts from Jamaica, the Dominican Republic and representatives from American Society of Hematology (ASH) to discuss shared challenges and opportunities for integrated care approaches, regional collaboration and data-driven advocacy.

💬The discussions focused on strengthening government ownership and empowering patient organisations, highlighting opportunities for shared learning, stronger regional connections and more coordinated approaches to care.

➡️ As a next step, partners will continue to share experiences and best practices to strengthen the partnership across the Caribbean.

Thank you to NNHF partners, and our NNHF expert volunteers for their time, experience and commitment!

12/07/2026

12/07/2026

is at the International Society on Thrombosis and Haemostasis (ISTH) Congress connecting with partners and peers to exchange learning, strengthen collaboration and advance shared action for better care. 🇫🇷

👋Stop by and meet Denise, Carole, Cyrus Njuguna and Célia to explore how we can continue building capacity, supporting locally led solutions and ‘Impacting care. Together’.

📍Booth number 301

06/07/2026

After seven years on the NNHF Council, Prof Johnny Mahlangu, pictured top right, has decided to step down from his role.

Prof Mahlangu has contributed deep expertise in haemophilia and inherited blood disorders, helping guide NNHF’s work on diagnosis, care pathways, local leadership and sustainable models of care across Africa.

His words capture the purpose behind his contribution:

“Serving on this Council has been far more than a governance role. It has been an opportunity to contribute to something profoundly important: advancing equitable care, dignity, and hope for individuals living with haemophilia, sickle cell disease, and other inherited blood disorders worldwide.”

We are deeply grateful for Prof Mahlangu’s invaluable support. His expertise, perspective and collegiality will be truly missed.

As Prof Mahlangu steps down, we are pleased to welcome Dr Kibet P. Shikuku, pictured left, as a new Council Member as of July 2026.

Dr Shikuku is already closely connected to NNHF’s mission. A specialist in human pathology and haematology, he has worked with NNHF and regional partners to expand access to blood disorders care in East Africa. He has also worked alongside Prof Mahlangu, most recently as part of the validation group of the Continental Plan for Sickle Cell Disease and Other Rare Blood Disorders, convened by Africa CDC and supported by NNHF.

Welcome, Dr Shikuku. Thank you, Prof Mahlangu.

Find out more about Dr Kibet Shikuku here: https://nnhf.org/about-us/our-team/kibet-shikuku/

30/06/2026

📸 Impact spotlight: June 📸

𝗦𝘁𝗿𝗲𝗻𝗴𝘁𝗵𝗲𝗻𝗶𝗻𝗴 𝗳𝗿𝗼𝗻𝘁𝗹𝗶𝗻𝗲 𝗵𝗮𝗲𝗺𝗼𝗽𝗵𝗶𝗹𝗶𝗮 𝗰𝗮𝗿𝗲 𝗶𝗻 𝗝𝗮𝗺𝗮𝗶𝗰𝗮

Pictured here are expert volunteer haemophilia nurse Molly Ndeble from the UK, on the left, and Dr Magdalene Nwokocha, haematologist, on the right, co-delivering hands-on training for nurses in Jamaica.

🩺 Across Jamaica, nurses and emergency department teams took part in training to strengthen practical skills in haemophilia care.
📍 Delivered with the Jamaica project team, the training reached nurses across the island and extended to emergency departments in Kingston, Mandeville and St Ann’s Bay.
🎯 The goal: to support earlier symptom recognition, referral to appropriate care and timely follow-up for people living with haemophilia.

As a next step, Dr Nwokocha and other doctors from the haemophilia and sickle cell disease team will join an -hosted workshop in the Dominican Republic to discuss the future of integrated care and support the development of a regional Caribbean coalition.

👏Thank you to everyone involved for helping strengthen frontline haemophilia care.

27/06/2026

at

The Novo Nordisk Haemophilia & Haemoglobinopathies Foundation will attend the 34th Congress of the International Society on Thrombosis and Haemostasis (ISTH) taking place in Paris from 11–14 July.

We look forward to connecting with partners and the wider haemostasis community to exchange knowledge, explore collaboration and discuss ways to improve access to care.

📍Booth 301, Paris Expo Porte de Versailles (Pavilion 7)
📅 11–14 July 2026
📩 Stop by or schedule a meeting ahead at [email protected]