At that time, Adrienne had never ever met another HAE sufferer, and first became aware of HAE International in 2014 when she was persuaded by Steen Bjerre to start up the S.A. patient group. She was initially joined by her daughter, Tamsin Van Vlaanderen. Shortly afterwards, Hana Faulds, MJ Dafel and I, all HAE patients, joined the team. Hana has recently stepped down from the HAE board and is currently spending time in Sweden where she continues her work with the HAE International Youth team.
In 2017, with the help of Professor Mike Levin from AFSA, we were able to arrange the first HAE S.A. patient meeting, with our second meeting taking place in 2019. The 2020 scheduled meeting was unfortunately cancelled due to covid restrictions.
HAE S.A. is now a registered non-profit company with Section 18A status and a board comprising of four members; myself, Adrienne, Tamsin and MJ. We presently have 104 patients registered on our database.
We are organised on a project-based structure and work together on a variety of projects with regular feedback between members. We work closely with various industry experts, medical professionals, pharmaceutical companies, and other organisations within the rare disease network.
We have numerous advocacy, training and educational activities and events planned for 2022 and look forward to expanding our efforts to help grow our organisation and increase knowledge of HAE across S.A.