Diagnosis and education for a better future in Uganda

Natasha Kopitsis
J Haem Pract 2016; 3(2):1 - 3. doi: 10.17225/jhp00086

Since 2005, the Novo Nordisk Haemophilia Foundation (NNHF; www.nnhf.org) has worked in collaboration with local partners and internationally renowned experts to improve access to haemophilia care. The NNHF has identified three areas on which to focus its activities in order to create impact where it is most needed: capacity building, diagnosis and registry, and education and empowerment. Underpinning these focus areas are targeted awareness creation activities and the development of strategic partnerships, which enable and facilitate local impact creation through empowered community advocates and authority engagement. NNHF supports fellowships, local development projects, and recognises extraordinary achievements via the annual ‘NNHF Project of the Year Award’ and the ‘NNHF Community Award’. Raising awareness of haemophilia in Uganda was the NNHF global fundraiser in 2015. This article summarises how the donations raised were used to establish diagnosis and education for a better future for Uganda’s haemophilia patients.

Uganda, diagnosis, haemophilia

A twin-track approach to developing haemophilia care in Uganda

Mike Holland
J Haem Pract 2016; 3(2):1 - 6. doi: 10.17225/jhp00090

Services for people with haemophilia in Uganda are poor, resulting in a very low number of confirmed diagnoses. Over the past year, the Haemophilia Foundation of Uganda (HFU) has engaged in a concerted and coordinated media campaign focusing on radio, television and social media promoting the message that haemophilia results in painful shortened lives but is a treatable condition if appropriate services are in place. At the end of 2015, this awareness campaign culminated in a patient-screening day, along with a patient information camp. In advance of the patient testing day, a team from London’s Great Ormond Street Hospital ran an educational workshop for staff from Mulago Hospital. The team also attended the testing day, taking clinical histories from those attending, and ran workshop sessions at the patient meeting. The physician-training day attracted obstetricians, paediatricians, nurses, dentists, physiotherapists, midwives and pharmacists. Delegates understood that to develop a haemophilia service in Uganda required capacity building, and awareness raising, initially at a central level but gradually moving out to the regions. Physicians in Uganda have now embarked on a journey to providing haemophilia care. The next steps are to build political engagement and to continue raising awareness among the population.

twinning, Uganda, haemophilia