From HAE South Africa
On 11 January 2022 HAE South Africa embarked on a new social media campaign. As of 28 February, our Facebook reach was up by 955% compared to the previous period, with our Instagram reach growing by 330%. Our new website will be launched in the next couple of weeks.
We received several inquiries from people who had recognized the symptoms and pictures shared on our social media sites and they were referred to our HAE physicians for testing. We have added another four patients to our database and are awaiting the test results for a few others.
For Rare Disease Day on 28 February, we created a video detailing our achievements since our inception in 2016 – and on 5 March, some of our patients took part in the Rare Diseases South Africa family day along with other rare disease patients and organizations.
HAE South Africa chairman Janice Strydom was invited to do a presentation at the Takeda conference in Johannesburg on 3 March to talk about her experience as an HAE patient and discuss the role of patient organization within healthcare context.
