HAE South Africa was founded in 2016 in response to an increasing frustration at the lack of information, patient support and restricted availability to medication in this country. I personally had never ever met another sufferer at that time. The first time that I did was in Spain in 2017 when I voluntarily joined a group walking the Camino prior to their conference in Budapest.
I had become aware of HAEi in 2014 and joined their Facebook page which I found most inspiring although it was primarily based in Europe. At that stage I was not really aware of any other patient groups or even remotely knew how they worked, but was eventually persuaded by Steen Bjerre to start up the group here in SA as I had no way of knowing how or where to find those afflicted. With zero medical knowledge it was a little daunting to say the least. So for a while it was just me along with the help of my daughter, Tamsin, I was then contacted by Janice, Hana and eventually MJ. So it really was little steps which evolved into the amazing group that we have now.
Eventually I was able, with the help of Mike Levin, to access some contacts. This effort culminated in the first patient meeting in 2017 and another in 2019. The 2020 scheduled meeting was of course cancelled but we are now legally a registered non-profit company with a functioning board and meet online regularly. We are organised on a simple business structure which is project based with individuals running separate projects with regular report backs. We are now working on a plan to move forward with a proper financial plan but are nevertheless quite proud of what we have achieved in such a short time and of our tally that has grown to almost 100 patient members.
We look forward to expanding our efforts after the pandemic but have taken this opportunity to consolidate a solid base. We aim to run with 5 board members and are required to appoint an accounting officer soon.