From Janice Strydom, HAE South Africa
HAE SA started 2023 with the exciting announcement that icatibant, our first treatment for acute attacks of HAE, had been registered. This is a significant milestone for our organization and our patients, and we wish to thank everyone who contributed to this process for their dedication to making this possible. The official launch of icatibant took place at the Allergy Society of South Africa’s annual conference on 28 September 2023. We currently have two medications on trial in S.A.
In the run-up to Rare Disease Day 2023, we joined Rare Disease S.A in their “#1in15” campaign, where we shared one “HAE fact” on our social media pages each day for the month of February. On 4 March, we joined 85 rare disease patients on the annual Denim Walk at the Walter Sisulu Botanical Gardens to show support for the 1 in 15 patients living with rare diseases around the world.
28 February marked the official launch of the Sinovuyo South African Virtual Angioedema Centre, the first of its kind in Africa. The center is under the guidance of Prof. Jonny Peter and his team of angioedema specialists and is named in honor of Sinovuyo Nkelenjane, a 7-year-old patient who sadly lost her life to an HAE attack. Watch Sinovuyo’s story here: https://youtu.be/RVn2r2dm4ko
The HAE TrackR app was made available in a further two of our official languages, Afrikaans and Zulu.
In the run-up to hae day :-) on 16 May, we shared a number of patient stories as well as features on the HAE physicians who dedicate so much of their time to the diagnosis and treatment of our patients. We were also able to share the news that C1-INH functional testing is now available in S.A.
On 26 July, we were joined by patients, representatives from pharmaceutical companies, and physicians for our HAE S.A Treatment Education webinar, where our guest speakers, Profs. Jonny Peter and Mike Levin shared some insights into current and new treatment options.
Later in the year, a CPD-accredited Advanced HAE Masterclass for healthcare professionals was hosted by The Allergy Foundation of South Africa.
We shared our three-part educational video series “Welcome to the World of HAE” – an easy-to-understand video series explaining symptoms, triggers, types, genetics, diagnosis, and treatments. You can watch
the video here: https://youtu.be/27hIxPtLM88
Twenty patients and caregivers had the opportunity to attend the 2023 HAEi Regional Conference EMEA in Munich in October – a record number of participants from South Africa, which included four youngsters for the Youngsters track.
Our HAE burden of illness survey was completed by 24 patients, and the results were compiled at the end of October. An abstract was submitted for presentation at the Rare -X 2024 Conference – Africa’s leading conference on rare disease and patient access – and we will be presenting “The burden of hereditary angioedema in South Africa in 2023: a patient survey” as an oral presentation at the conference in February 2024.
HAE S.A has made significant progress over the past year and could not have done so without the dedication of our physicians and the support and guidance of our colleagues and friends at HAEi and within the greater rare disease community. We look forward to seeing what the 2024 year holds for our organization.
