Our annual patient meeting was held on the 6th of April 2024 at the UCT Lung Institute in Cape Town and was attended by 67 patients, caregivers, and physicians. Topics covered included new medications, drug trials, pediatrics, genetics, and mental health. We had a successful, productive day learning more about HAE and meeting our new members. We received some excellent feedback from our attendees from our evaluation survey:

“A very well-run and informative patient meeting; good to be made aware of new treatment options”

“I have learned more about my HAE, looking forward to more engagement and growing awareness of HAE”

“Very informative sessions and answered the most challenging questions that I had. It was a great experience, after having struggled with my child since birth who is now 16. Today’s engagement gave me insight and important awareness”

Our mental health program “Mental Health Matters” was launched on HAE Day, and over the following six weeks, we posted a series of videos covering topics such as anxiety, depression, panic attacks, trauma, and self-care. The program, in partnership with Brittney Carmichael and Psynergy Counselling, addresses the emotional challenges faced by our patients, families, and caregivers. The video series can be viewed on the HAE S.A website as well as our social media channels.

In October, our team attended the HAEi Global Leadership Conference in Copenhagen, where we were invited to share our perspectives on cultural sensitivity and stigma reduction during Saturday’s session. We had the opportunity to learn more about running a successful patient organization as well as meeting up with old and new colleagues and friends.