Haemophilia is a hereditary bleeding disorder which can cause impaired mobility and death without access to care. The Novo Nordisk Haemophilia Foundation (NNHF) has been supporting haemophilia care in India for 15 years, initially with a focus on strengthening diagnostics and care at state- and regional level. Since 2020, NNHF has supported the Ministry of Health and Family Welfare’s ambition to set up a national care system for blood disorders with the establishment of seven National Referral and Training Centres and standardisation of training of health care professionals. In parallel, it has worked to strengthen the 96 chapters of the patient organisation Haemophilia Federation of India brining about impressive systemic changes e.g. through an increase of national budget allocation.
The current project will be implemented by NNHF, the Haemophilia Federation India and the National Institute of Immunohematology in collaboration with national patient organisations for Sickle Cell and Thalassemia. The aim of this project is to expand access to diagnosis and care for people with bleeding disorders in India building on NNHF’s long-term engagement in the country. This project will support NNHF’s work to decentralise care, build referral systems and piloting effective models of integration of blood disorders and point of care diagnosis by:
- Improving haemophilia care infrastructure and referral by strengthening and establishing state-level referral centres and 40 district level Haemophilia Treatment Centres.
- Continuing state and national level advocacy in collaboration with the National Alliance of Sickle cell Organisations and the National Thalassemia Welfare Society.
- Developing and piloting a model of integrated screening and care for blood disorders in two States
The project will directly benefit 26,500 people with bleeding disorders and their families across India and several thousands of people with sickle cell disease and thalassemia in two pilot states.
