The report was written by the World Heart Federation on behalf of RHD Action. It provides a ‘snapshot’ of the people, policies and programmes that are working to prevent and control RHD around the world today. It features interviews with the people at the heart of the RHD community: both those living with RHD and the health workers who care for them.
There is a section on this issues in South Africa written by Dr Liesl Zühlke, Paediatric Cardiologist, Red Cross Children’s Hospital and Groote Schuur Hospital and University of Cape Town; Co-Director, RhEACH
You can read the report in full here.
Extract from the South African Section of the Global Status Report
The Awareness, Surveillance, Advocacy and Prevention (ASAP) programme continues apace in South Africa, with each of the four pillars served by a programmatic area. The programme’s strong record of surveillance projects continues with INVICTUS, which is the most ambitious RHD registry project launched to date. South Africa is also moving ahead in terms of research through the RHDGen project, which is studying the genetic makeup of people living with RHD, in order to identify people at high risk of developing RHD so that they may be prioritised for preventive treatment.
Advocacy for people living with RHD is another priority for the future. The South African programme has a good track record of including and empowering these communities: for example, the findings of the REMEDY study and RHDGen are being communicated to participants living with RHD before being released to the wider scientific community.
Patient advocacy will be a central theme during 2016’s annual congress of the South African Heart Association in Cape Town. A consortium of RHD organizations, including RHD Action, will invite 150 people living with RHD to join the congress for a morning of mobilization and advocacy, providing a venue for people living with RHD to better understand and manage their disease, network with their peers, and strengthen their relationships with the RHD research community.