From President Adrienne de Jongh, HAE South Africa:
This year we have used the lockdown time to consolidate our admin and legal positions. We have formally established a non-profit company and thereafter concentrated on finalizing the legal infrastructure to be able to accept donations.
We have regular Zoom meetings and are adding an additional board member.
We have formulated a presentation that will be used to interact with patients in their teens as we view this as the entry point for patients becoming consciously responsible for their own treatment and HAE control. This project has since been incorporated into the youth sector who will expand and develop it further as they see fit. We are very proud of this initiation and plan to expand it sector by sector in the future so that all ages will eventually be covered.
We have also established links with pharmaceutical companies presently supplying our medications and plan to extend this outreach to companies who are planning to market the new medications.
