From HAE South Africa

We started an awareness campaign running up to hae day :-) and began by filming three patient stories for inclusion on our social media platforms. We managed to secure seven interviews with various radio stations around the country in the run-up to, and on, the awareness day. We had ten articles published in newspapers and magazines around South Africa, including three feature articles with interviews with some of our patients. Our stories appeared in both print and digital media.

We have recently launched a new website under the HAEi umbrella – please have a look at southafrica.haei.org. We have had numerous inquiries from patients via the new website, who we have directed through our testing and referral system to our ACARE Center.

Our patient database has increased from 104 to 116 patients in the last quarter. 

Our chairperson, Janice Strydom, attended a press briefing in conjunction with Takeda and Rare Diseases S.A. for the “1 in 15” campaign, where we were able to share our patient stories and communicate our challenges in relation to access to healthcare, quality of life and time to diagnosis with various media outlets.