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| Former Muhimbili National Hospital Executive Director, Dr. Lawrence Museru, addresses participants during a two-day meeting focused on uniting East African countries in the fight against haemophilia and sickle cell diseases. The event, held in Dar es Salaam, was organized by the Haemophilia Society of Tanzania with support from the Novo Nordisk Haemophilia Foundation. |
- Tanzania this week hosted a regional health meeting focused on uniting East African countries in the fight against haemophilia and sickle cell disease.
- The programme has trained hundreds of health workers, established 23 integrated clinics, and introduced new-born screening in remote regions.
- Leaders from Kenya, Uganda, Rwanda, and Tanzania shared progress, lessons, and a joint vision for the future of blood disorder care.
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| Dr. Kibeti Peter Shikuku, Coordinator of the Expanding Access to Blood Disorders Care Program and representative of the Kenya Haemophilia Association, speaks to participants during a two-day meeting focused on uniting East African countries in the fight against haemophilia and sickle cell diseases. |
Hosted by the Haemophilia Society of Tanzania with support from the Novo Nordisk Haemophilia Foundation, the meeting provided a space for countries to share lessons, review impact, and align future priorities. It also reinforced the importance of continued partnership between governments, health providers, and patient organisations.
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| Dr. Deo Soka, Executive Director of the Tanzania Sickle Cell Disease Alliance, delivers a presentation on sickle cell disease during the two-day meeting. |
Prof Lawrence Museru, Executive Director of Muhimbili National Hospital, welcomed participants to Dar es Salaam and commended the programme’s achievements. He noted the value of cross-country learning and the importance of building on the progress made through strong institutional collaboration.
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| Dr Stella Rwezaula, Chairperson of the Haemophilia Society of Tanzania, makes a point during the two-day meeting. |
In her opening remarks, Dr Stella Rwezaula, Chairperson of the Haemophilia Society of Tanzania, welcomed the regional partners and emphasised the role of shared experience in building stronger systems. “We are celebrating what we have achieved together while looking ahead with a unified vision. Tanzania is proud to be part of a regional effort that is transforming care for people with blood disorders.”
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| James Kago, Treasurer of the Kenya Haemophilia Association, speaks to participants during the two-day meeting. |
Since its launch in 2023, the programme has helped train more than 660 healthcare providers across the four countries. Twenty-eight professionals received specialised training in South Africa, India, and Kenya. In Tanzania, nine of these specialists are now supporting services in seven referral hospitals including Rukwa, Manyara, Tabora, Tanga, Kagera, Zanzibar, and Mara.
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| A section of participants engage in a discussion during the two-day meeting. |
Across the region, 23 integrated clinics were strengthened or newly established to provide combined haemophilia and sickle cell services. These clinics have improved access and reduced travel time for patients and families, many of whom previously relied on central hospitals for basic care. During the programme period, over 400 individuals were newly diagnosed or reconnected to care. In Tanzania, 74 people were identified and linked to services.
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| James Opere, Chairman of the Sickle Cell Federation of Kenya, addresses participants during the two-day meeting. |
National treatment guidelines were developed and these frameworks are now guiding standardised care and expanding frontline capabilities. Kenya also established a Centre of Excellence at the Kenya Medical Training College to lead regional training on blood disorders. Dr Kibet Peter Shikuku of the Kenya Haemophilia Association reflected on the practical value of the collaboration. “This partnership allowed us to move faster and more effectively. We shared training models, advocacy strategies, and built something that each country can now sustain and build upon.”
Advocacy and patient engagement were a key part of the programme. Youth training, organisational development, and exchange visits helped strengthen national patient groups. In Uganda, advocacy led to the allocation of public funds for diagnostic reagents. In Tanzania, blood disorder care is being integrated into government health planning for the first time.
Ms Agnes Kisakye of the Haemophilia Foundation of Uganda said the progress is being felt at the community level. “Access to care is improving and families feel supported. These changes are not only about systems but about real people who are finally being seen and heard.”
The meeting in Dar es Salaam focused not only on achievements but also on sustainability. Delegates worked through a joint planning process to identify regional priorities for the next two years. These include expanding outreach services, increasing early diagnosis, strengthening data systems, and ensuring that national governments continue to invest in care.
Dr Evariste Ntaganda of the Rwanda Federation of Hemophilia underscored the strength of the regional approach. “Our countries moved together and that created a level of trust and learning we would not have had on our own. This is what health leadership looks like when it is shared.”
The programme also piloted newborn screening in Mara, Tanzania, where more than 2300 infants were tested for sickle cell disease. Around 400 children have now been enrolled into care. With an estimated 20000 children born with sickle cell disease each year in East Africa, the need for early detection and sustained care remains a high priority.
Participants agreed that one of the most important lessons from the programme is the value of working closely with government systems. National ownership ensures wider reach and long-term sustainability. “When you work with government, you reach more people and strengthen systems that last,” said Llyord Mwaniki, Programme Manager, Novo Nordisk Haemophilia Foundation
Muhimbili National Hospital (MNH) has been instrumental in supporting haemophilia care in Tanzania, providing essential resources and expertise. Professor Mohamed Janabi, the Executive Director of MNH, has emphasized the importance of public education and awareness on rare diseases, including haemophilia. In March 2025, during an event marking World Rare Disease Day, he stated, "Strengthening the capacity of medical practitioners will enable them to understand various aspects of rare diseases, thus improving diagnosis and treatment."
As the regional initiative enters its next phase, partners reaffirmed their commitment to staying aligned, learning from each other, and keeping people with haemophilia and sickle cell disease at the centre of national health systems.
Contact:
Dr. Abdallah Makalla,
Secretary – Haemophilia Society of Tanzania (HST)
Tel: +255 755 756 638
Email: hemophiliatz@gmail.com
About the Novo Nordisk Haemophilia Foundation
The Novo Nordisk Haemophilia Foundation is a non-profit organisation based in Switzerland that works to improve access to care for people with haemophilia and allied bleeding disorders in developing and emerging countries. Through partnerships with local organisations, healthcare providers, and governments, the Foundation supports sustainable programmes focused on diagnosis, treatment, education, and advocacy. Since its establishment in 2005, the Foundation has partnered with over 87 countries to strengthen national health systems and empower communities.
About Haemophilia Society of Tanzania (HST)
The Haemophilia Society of Tanzania (HST), established in 2002, is a non-profit organization committed to improving the quality of life for individuals with haemophilia and other bleeding disorders in Tanzania. HST's efforts are focused on raising awareness, advocating for better healthcare services, and providing support to affected individuals and their families. Through various initiatives and partnerships, HST aims to enhance the understanding, diagnosis, and treatment of these conditions, contributing significantly to the healthcare landscape in Tanzania.
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