We are delighted to announce South Africa as the NNHF Project of the Year for 2021. Thanks to the dedication and commitment of the South African Haemophilia Foundation (SAHF) and its Medical and Scientific Advisory Council (MASAC) volunteers, people living with bleeding disorders in South Africa will benefit from the project’s achievements: a national Haemophilia patient registry, fewer disparities in regional care of blood disorders and a new generation of young leaders ready to continue impacting care in the country.
What led the NNHF Council to select South Africa as Project of the Year? Ludovic Helfgott, Foundation Council President, highlights some of the key reasons behind the decision: “The team successfully developed an engaged group of young leaders, thus ensuring a future for the patient organisation. Despite the COVID-19 global pandemic, the project progressed and evolved, the team continued to provide support and to organise virtual training for people with Haemophilia and healthcare professionals, which is a clear indicator of the leadership of the project team.”
Let’s look at a few of the ways in which this year’s winning project achieved its goals while surpassing expectations.
The primary achievement of South Africa’s fourth project with NNHF was the successful creation of a national patient registry that will be the backbone of influencing change at healthcare policy and grassroots levels. Data generated from the registry is now being used by 15 treatment centres across South Africa to provide epidemiological information about Haemophilia in the country and support advocacy activities.
Importantly, the project early on addressed the need for succession planning within the haemophilia community in South Africa. The creation of a youth group since 2017 has engaged a new generation of young leaders from all regions of the country who have been trained and given responsibility for outreach in their local areas, helping to secure the future of haemophilia care in the region.
Operating out of Cape Town, the SAHF project team organised workshops in rural areas to address regional disparities in care. Throughout the three-year project, which will be complete in the second quarter of 2021, the group ensured training for over 300 doctors, 100 nurses and 17 physiotherapists. Organising these activities in 2020, however, presented particular challenges.
Bradley Rayner, president of the patient organisation, explains: “In-person training and outreach were key components of our project, but these activities were greatly impacted by the COVID-19 pandemic. We worked together with different stakeholders to find solutions, purchasing data packages for people to meet virtually and, together with the SAHF, initiating the production of cloth masks and face shields.”
The group went one step further to promote the hands-on approach, inserting messages with masks for recipients to take a picture and post on social media with hashtags: #Haemophilia, #Get+involved, #Covid-19, #SocialDistance, #WashHands. In addition, the South Africa 4 team also took an active role in NNHF’s virtual strategic planning workshop in Lesotho, for example, while also working to support NNHF partners in other African nations and in India.
A big thank you to the Novo Nordisk Haemophilia Foundation