From Regional Patient Advocate Fiona Wardman
HAE South Africa is making fantastic progress on all fronts, with awareness and education of HAE in the community and acute therapy now registered!
From Chairman Janice Strydom, HAE South Africa
We are pleased to announce the launch of the Sinovuyo South African Virtual Angioedema Center, the first of its kind in Africa. The center is the virtual arm of the UCT Lung Institute, Allergy & Immunology Unit, under the leadership of Prof. Jonny Peter and his expert team of angioedema specialists. The center is named after Sinovuyo Nkelenjane, a seven-year-old girl who tragically lost her life during an angioedema attack. You’ll find the virtual center at https://aiu.haei.org.
We embarked on a social media campaign during February 2023, where various media articles and radio interviews were conducted to raise awareness and introduce the new concept to medical professionals and the South African public. We have already had a number of inquiries and appointments made via this new virtual concept.
The HAE TrackR App is now available to patients in two additional South African languages, Afrikaans and Zulu.
We are also thrilled to announce that we have finally received approval from the South African Health Products Regulatory Authority for icatibant, the first acute therapy to be approved for our patients.
For hae day :-) 2023, we encouraged patients, caregivers, and our doctors to join in the fun and add their steps for the HAEi Activity Challenge. Reminders were regularly sent on our WhatsApp group and shared via our social media pages. Rare Diseases South Africa supported our #activeforHAE challenge by sharing our media posts on their “Rare Aware” media pages. From 1 May 2023, in the run-up to the awareness day, we shared a series of patient stories as well as introduced our partners and colleagues from the medical and rare disease industry who contribute a big part towards the diagnosis and treatment of our patients as well as providing support and guidance for our organization.
