From President Adrienne de Jongh, HAE South Africa
HAE South Africa have successfully been registered as a non-profit company which will allow us to progress and collect some much-needed funds. We have four directors at present and plan to add a fifth soon so that we can fulfill all the roles we have set out to accomplish.
We have had a meeting with one of the drug companies so far and plan to follow up with the other relevant players in the near future. We have also established firm links with the Rare Disease Foundation in South Africa, and one of our members is an ambassador for HAE within their organization and has done a fair amount of PR for HAE.
For Rare Disease Day 2020, we made a few video clips used on social media. We also made a video which was posted by backabuddy, a South African crowdfunding company. This is an example of some of the media coverage we got, in this case in the Benoni Times: https://benonicitytimes.co.za/369583/morehill-resident-proudly-a-rare-disease-ambassador.
The annual patient and carer meeting was scheduled for 18 April 2020 in Cape Town. However, due to the COVID-19 situation, the meeting has been postponed. Please check https://southafrica.haei.org for further information.
HAE South Africa has grown the patient list to 97 members.
