Novo Nordisk Haemophilia & Haemoglobinopathies Foundation

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Novo Nordisk Haemophilia & Haemoglobinopathies Foundation

Together with local partners, NNHF facilitates access to care for people with haemophilia and haemoglobinopathies in low- and middle-income countries.
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27/04/2026

We were truly impressed by the exemplary infrastructure and the quality of care you provide for people with haemophilia and thalassaemia. Thank you 🙏 for the warm hospitality, we look forward to continuing the collaboration!

21/04/2026

in Kuala Lumpur, Malaysia

What a Congress so far. The energy, exchanges, and connections have been truly inspiring ! Here are a few snapshots. 📷

Please keep sharing your meeting moments and encounters on social media - and don’t forget to tag us! We love seeing all your photos and amazing activities. 😍

Still in Kuala Lumpur?🙌🏻
Us too! Come by booth 402 today, and connect with us before the Congress wraps up. 👋

17/04/2026

📸 Impact Spotlight: April 📸

Welcome to the latest spotlight on : We are proud to share a story that speaks directly to this year's global theme: diagnosis. 🩺

𝗠𝗲𝗲𝘁 𝗠𝗼𝗵𝗮𝗺𝗲𝗱 𝗕𝗮𝗻𝗴𝘂𝗿𝗮
Pictured is Harry Mayeah Koroma, President of Frontiers for Haemophilia and Bleeding Disorders Sierra Leone (left), during a visit in 2024 to young Mohamed, the first haemophilia case ever diagnosed in Sierra Leone, alongside his mother and siblings. A moment that represents much more than one diagnosis. 🤍

𝗪𝗵𝗮𝘁'𝘀 𝗰𝗵𝗮𝗻𝗴𝗶𝗻𝗴 𝗼𝗻 𝘁𝗵𝗲 𝗴𝗿𝗼𝘂𝗻𝗱?
Since the first NNHF project, the total number of diagnosed haemophilia cases has risen from 32 to 47, a 43% increase in diagnosis rates. Behind these numbers are tangible actions:
✅ A core team of champion nurses trained in family tree tracing to identify suspected cases
✅ A dedicated laboratory technician with expertise in haemophilia diagnosis
✅ A trained physician providing basic haemophilia care
✅ Advocacy efforts ensuring the regular availability of diagnostic reagents at Connaught Hospital, made possible with the support of the Mayor of Freetown

𝗪𝗵𝘆 𝗶𝘀 𝘁𝗵𝗶𝘀 𝘄𝗼𝗿𝗸𝗶𝗻𝗴?
At the heart of this progress is a strengthened patient organisation and a committed team of volunteers driving change from within. Outreach workshops across Makeni, Kono and Freetown have raised awareness of haemophilia among healthcare professionals and the wider public, fostering earlier identification and a broader understanding of the condition. 🌍

𝗟𝗼𝗼𝗸𝗶𝗻𝗴 𝗮𝗵𝗲𝗮𝗱 👀
The current project aims to establish multidisciplinary care in the capital and initiate basic and emergency care across three regions, potentially reducing travel time by up to 6 hours for people with haemophilia living outside the city.

Today, we celebrate every diagnosis, every dedicated volunteer and every step forward. The journey of ‘Impacting care. Together’ continues.

14/04/2026

📣 𝗛𝘆𝗯𝗿𝗶𝗱 𝘄𝗼𝗿𝗸𝘀𝗵𝗼𝗽 𝗶𝗻 𝗠𝗲𝘅𝗶𝗰𝗼: 𝘀𝗵𝗮𝗽𝗶𝗻𝗴 𝘁𝗵𝗲 𝗳𝘂𝘁𝘂𝗿𝗲 𝗼𝗳 𝗵𝗮𝗲𝗺𝗼𝗽𝗵𝗶𝗹𝗶𝗮 𝗰𝗮𝗿𝗲

On 10 April, we brought together healthcare professionals from across Mexico and members of the haemophilia community for a hybrid workshop, uniting voices and expertise to move closer to a shared goal.

🎯 The aim: to 𝗱𝗲𝗳𝗶𝗻𝗲 𝗮 𝗻𝗮𝘁𝗶𝗼𝗻𝗮𝗹 𝗵𝗮𝗲𝗺𝗼𝗽𝗵𝗶𝗹𝗶𝗮 𝘀𝘁𝗿𝗮𝘁𝗲𝗴𝘆 that supports Mexico to achieve self-sufficiency in bleeding disorders by 2030.

💬 Amongst multiple topics, we discussed:
• How to improve the 𝗻𝗮𝘁𝗶𝗼𝗻𝗮𝗹 𝗿𝗲𝗴𝗶𝘀𝘁𝗿𝘆 𝘀𝗲𝘁𝘂𝗽
• How to conduct centre assessments nationwide to help 𝘀𝘁𝗮𝗻𝗱𝗮𝗿𝗱𝗶𝘀𝗲 𝗰𝗮𝗿𝗲
• Exploring how a 𝗰𝗼𝘀𝘁-𝗯𝗲𝗻𝗲𝗳𝗶𝘁 𝗮𝗻𝗮𝗹𝘆𝘀𝗶𝘀 could strengthen advocacy efforts to expand home treatment and reduce costs for patients

➡️ 𝗟𝗼𝗼𝗸𝗶𝗻𝗴 𝗮𝗵𝗲𝗮𝗱: Next steps include consolidating the workshop outcomes into a national project application.

❓𝗥𝗲𝗮𝗱𝘆 𝘁𝗼 𝗴𝗲𝘁 𝗶𝗻𝘃𝗼𝗹𝘃𝗲𝗱?
Haematologists in Mexico: contact info@nnhf.org to find out how you can support the next steps from the workshop.

Thank you to everyone who contributed to this important conversation!

08/04/2026

📣Francophone West Africa project kick-off: A milestone moment in Abidjan 📣

This project launch brought together Côte d'Ivoire, Senegal, Mali, Benin and Guinea to move from shared challenges to shared opportunities when it comes to haemophilia and sickle cell disease (SCD) care.

Highlights included:
✅ Panel discussions on the state of care: progress, challenges and opportunities
✅A Policy Lab to define the changes needed over the next 5 years and immediate actions
✅ “One Region, One Ask”: agreeing on an aligned approach to regional advocacy.

Thank you to to the Novo Nordisk Foundation for supporting this project, and to the government representatives, West African Health Organisation, healthcare professionals, patient associations and partners who joined us and helped generate this momentum.

🔜 What's next: The five countries will move to action - identifying national advocacy priorities grounded in data and working together towards a collective regional voice.

👏

31/03/2026

📸 Impact Spotlight: March 📸

Welcome to the third instalment of our series highlighting people, moments and progress in haemophilia and haemoglobinopathies care.

🇳🇬 𝗠𝗲𝗲𝘁 𝗝𝗼𝘀𝗲𝗽𝗵𝗶𝗻𝗲 𝗢𝗹𝘂𝗻𝗮𝗶𝗸𝗲, 𝗳𝗼𝘂𝗻𝗱𝗲𝗿 𝗼𝗳 𝘁𝗵𝗲 𝗕𝗲𝘂𝗹𝗮𝗵 𝗦𝗶𝗰𝗸𝗹𝗲 𝗖𝗲𝗹𝗹 𝗙𝗼𝘂𝗻𝗱𝗮𝘁𝗶𝗼𝗻 𝗮𝗻𝗱 𝗮 𝘁𝗶𝗿𝗲𝗹𝗲𝘀𝘀 𝗽𝗮𝘁𝗶𝗲𝗻𝘁 𝗮𝗱𝘃𝗼𝗰𝗮𝘁𝗲. 🇳🇬
Josephine contributes her time and resources to raise awareness, run community screenings, and deliver medicines to people living with sickle cell disease in Nigeria.

Last month Josephine joined 70 other leaders at the Inherited Blood Disorders Leadership Forum in Abuja. The Forum set out to move Nigeria from fragmented efforts to a coordinated, government-owned national programme for sickle cell disease and haemophilia, backed by sustainable domestic financing. 🎯 Key priorities that are now being followed up on include creating budget lines and insurance coverage, decentralising services, ensuring access to essential medicines, and building stronger data and registry systems. 👏

📣 Stay tuned for the launch of the full Forum report and policy recommendations...📣

20/03/2026

NNHF at the WFH 2026 World Congress in Kuala Lumpur

The global bleeding disorders community will gather in Kuala Lumpur for the World Federation of Hemophilia World Congress. The Novo Nordisk Haemophilia & Haemoglobinopathies Foundation (NNHF) looks forward to engaging in this key forum focused on collaboration and sustainable impact.

📍 Kuala Lumpur Convention Centre
👉 Visit us at the NNHF booth #402 from 20-22 April

📣 Why meet with NNHF?
Connect with us to explore partnership opportunities, exchange good practices across regions, strengthen knowledge sharing, and discuss how shared expertise can support locally led care initiatives.

📩 Planning ahead?
To schedule a meeting during the congress, please contact info@nnhf.org.

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04/03/2026

📣 The NNHF Year in Review 2025 is here! 📣

This year we focused on 'Fostering connections and unveiling new horizons', and the results speak for themselves. Thanks to our partners, volunteers and funders, we reached new communities, launched meaningful initiatives, and expanded our impact.

Swipe through for some of the highlights, then read the full report for stories and outcomes that inspire: https://bit.ly/4lb9CGr

28/02/2026

📣 Today on Rare Disease Day we celebrate unity, solidarity and action for people living with inherited bleeding and blood disorders. 📣

We’re proud to share a new short film featuring our project partners in Assam, India 🇮🇳. Their integrated approach to haemophilia and haemoglobinopathies care aims to bring haemophilia, sickle cell disease and thalassaemia services together, to deliver better, more sustainable outcomes. 🤝

Watch the film to hear firsthand how collaboration, local leadership and targeted investment can transform access to diagnosis, treatment and lifelong care. 🎥✨

27/02/2026

📸 Impact Spotlight: February 📸

Welcome to the second instalment of our series highlighting people, moments and progress in haemophilia and haemoglobinopathies care.

𝗠𝗲𝗲𝘁 𝗗𝗿 𝗔𝗻𝘂𝗽𝗮𝗺 𝗗𝘂𝘁𝘁𝗮, 𝗡𝗮𝗿𝗲𝘀𝗵, 𝗝𝗮𝗻𝗮𝗿𝗱𝗮𝗻 𝗮𝗻𝗱 𝗗𝗿 𝗝𝗶𝘀𝗵𝗮𝗻 𝗔𝗵𝗺𝗲𝗱.

Pictured here at India's Assam Medical College, Naresh (whose brother lives with sickle cell disease), Janardan (living with haemophilia) and Dr Ahmed (whose son lives with thalassaemia) discuss how their communities could benefit from an integrated approach to haemophilia, sickle cell disease and thalassaemia.

With care for all three conditions available in one place, resources can be maximised and care can be aligned to shared needs. 🤲

With Rare Disease Day on 28 February, stay tuned to hear directly from Dr Dutta, Dr Ahmed and other members of the haemophilia and haemoglobinopathies community... 💬 🎬

Hemophilia Federation India

25/02/2026

👋NNHF team member alert: meet Ursula Porage Dona, Programme Manager for Asia, based in Bangkok, Thailand.👋

Ursula has joined the NNHF Programmes team and has already begun partnering with in-country organisations to deliver programmes on the ground and strengthen access to care for people living with haemophilia and haemoglobinopathies across Asia. She has also been engaging with partners during recent country visits, including meetings with stakeholders in Sri Lanka and India. 🤝

⏭️ What’s next:
-advance ongoing projects
-unlock collaboration opportunities
-support new project applications
-map unmet needs in haemophilia & haemoglobinopathies

🗨️A quick hello from her roots: “I was born in Lebanon, raised in the UAE, and originally come from Sri Lanka. I’ve also lived in Australia. I speak English, Sinhalese, and have a basic knowledge of Hindi.”

Who else is in the NNHF team? Click here: https://nnhf.org/about-us/our-team/

24/02/2026

📣 𝗘𝘅𝗰𝗶𝘁𝗶𝗻𝗴 𝗻𝗲𝘄𝘀 𝗳𝗿𝗼𝗺 𝗡𝗶𝗴𝗲𝗿𝗶𝗮 📣: Leaders in haemophilia and sickle cell disease care gathered in Abuja to agree urgent, actionable steps to strengthen services and explore an integrated approach to both conditions.

At the Inherited Blood Disorders Leaders Forum, more than 70 delegates - including federal and state health directors, clinicians, patient groups and international partners - endorsed policy recommendations to:

💰 Create 𝗱𝗲𝗱𝗶𝗰𝗮𝘁𝗲𝗱 𝗯𝘂𝗱𝗴𝗲𝘁 𝗹𝗶𝗻𝗲𝘀 for inherited blood disorders at national and subnational levels.
🤝 Establish a 𝗻𝗮𝘁𝗶𝗼𝗻𝗮𝗹 𝘁𝗲𝗰𝗵𝗻𝗶𝗰𝗮𝗹 𝘄𝗼𝗿𝗸𝗶𝗻𝗴 𝗴𝗿𝗼𝘂𝗽 for haemophilia and sickle cell disease
💉 Expand 𝗶𝗻𝘀𝘂𝗿𝗮𝗻𝗰𝗲 𝗰𝗼𝘃𝗲𝗿𝗮𝗴𝗲 to ensure access to essential medicines
📝Finalise and disseminate 𝗻𝗮𝘁𝗶𝗼𝗻𝗮𝗹 𝘀𝗶𝗰𝗸𝗹𝗲 𝗰𝗲𝗹𝗹 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗮𝗻𝗱 𝗵𝗮𝗲𝗺𝗼𝗽𝗵𝗶𝗹𝗶𝗮 𝗴𝘂𝗶𝗱𝗲𝗹𝗶𝗻𝗲𝘀

Supported by the Novo Nordisk Haemophilia & Haemoglobinopathies Foundation and in partnership with Novo Nordisk Foundation, these priorities aim to make care equitable, sustainable and accountable across Nigeria.

Follow NSHBT Official to be one of the first to see the full report from the Forum. Congratulations to the project team, speakers and panellists for being part of this important and fruitful event!

Thank you to international speakers Dr Stella Rwezaula and Thomas Gowa and to everyone who made this possible.

Adresse

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Webseite

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