From HAE South Africa
HAE South Africa have received our approval as a non-profit company which means we are now able to actively raise funds for our organization. We have recruited two new members onto our committee, Jane Rushton, an HAE patient, and attorney, as well as Sister Sheila Baker, a registered nurse who has many years of experience working alongside our HAE specialists and currently works as a locum at the UCT Lung Institute.
In August, Takeda and Professor Jonny Peter from our ACARE Centre In Cape Town, hosted the first of several planned training symposiums, with Dr. Marc Riedl and Dr. Aleena Banerji as guest speakers. The session was well attended with over 70 medical practitioners and other stakeholders in attendance. The Allergy Foundation of South Africa (AFSA) held a Masterclass in October consisting of an in-depth module focusing on angioedema, including an introduction to HAE and pathophysiology, clinical characteristics, diagnosis, and management.
Over the next year, in conjunction with Professor Mike Levin from AFSA and Professor Jonny Peter, our focus will be on physician awareness and education, to ensure that all doctors on our referral lists are up to date on diagnosis and treatment protocols and to recruit new doctors who are willing to treat HAE patients. An Angioedema Hotline has been set up and will form part of this initiative.
We are currently working on social awareness of HAE via newspaper and magazine articles, and we are in the process of upgrading our website and other social media platforms. We have implemented a couple of new initiatives to encourage more involvement amongst our patients, via a closed Facebook group as well as an “HAE Buddy System” where we are able to put patients of similar ages and circumstances in contact with others for emotional support.
In conjunction with Rare Diseases S.A. and other more advanced rare disease associations, we are exploring several new options regarding reimbursement and funding of medications.