Working together to advance care for haemophilia and sickle cell disease

The “Accelerating access to blood disorders care in Kenya and Tanzania” project is co-funded by the Novo Nordisk Foundation and the Novo Novo Haemophilia Foundation.

“My name is Zuhura. My grandson, Sahin, is 7 years old and lives with haemophilia A in Morogoro. His clotting factor medication is administered through the veins which usually requires trained personnel. Last year, I took part in an educational session organised as part of the Kenya-Tanzania joint project. Thanks to the special training they provided, I learned how to manage Sahin’s haemophilia at home on my own through self-infusion.“

As the administering of clotting factor medication takes a while, the nurse discusses with Zuhura about haemophilia and her experience taking care of her grandson. ©Amin Suwedi/Novo Nordisk Haemophilia Foundation/Fairpicture

“Not only is it empowering to be able to help my grandson, but I am pleased to share my knowledge with others. Like my friend Regina, whose son lives with haemophilia. The four of us often meet and share our experiences as guardians and boys with bleeding disorders. Best of all, a haemophilia clinic has now been established at the Morogoro Regional Referral Hospital, which means we are able to access care and treatment closer to home.”

Regina and Zuhura, together with the Jackson and Sahin, have formed a familial bond as parents and children living with haemophilia.
©Amin Suwedi/Novo Nordisk Haemophilia Foundation/Fairpicture

Kenya-Tanzania 2021 highlights

Joint project coordinators Dr Stella Rwezaula, President of the Haemophilia Society of Tanzania, and Dr Kibet Shikuku, Chairman of the Kenya Haemophilia Association, wrapped up the first year of accelerating access to blood disorders care together in Kenya and Tanzania with a number of achievements:

  • 4 days of high-level meetings with 70 participants including Ministry of Health officials from Kenya and Tanzania, medical advisory committee and strategy workshops for members of the patient organisations.
  • Joint resolution adopted for approach to standardise treatment guidelines, patient registries, training, and diagnosis.
  • 6 hospital centres established or strengthened – 2 in Tanzania and 4 in Kenya in 2021 (9 to-date). 
  • 200 healthcare workers trained.

Back to the Year in review 2021