From Regional Patient Advocate Patricia Karani
The recently concluded 2024 HAEi Global Leadership Workshop was very exciting for those who participated from Sub Sahara Africa. We had patients, doctors, and clinical officers from Mozambique, Comoros, and Kenya attend. The participants were very active, engaged, and eager to learn more about how to provide support for HAE patients in their countries. A highlight from the meeting was the breakout session, where we got a chance to meet and get to know each other on a personal level. The main discussions revolved around raising awareness, early diagnosis, treatment, and better management of the condition. We discussed limited resources and the lack of adequate knowledge in the countries, which is a primary challenge for all countries in this region. We also discussed possible solutions and how we could overcome some of these challenges based on available resources. We factored in questions and answers, which took most of the time during the breakout sessions. The participants reiterated that they had learned a lot from the main conference sessions and were particularly excited about the new HAEi FocalPoint tool, which was easy to join. The countries advised that it would be a very important tool to support their advocacy work; as a “one-stop-shop,” every tool they need in one application. The group was very vibrant and engaged in this session, and we found ourselves running over the time limits for the meeting. Participants appreciated this session, and we formed a communication link to keep in touch.
