From President Adrienne de Jongh
We are in the process of registering a nonprofit company so that we can in future access funding and consolidate the organization. We have increased our register of patients to 90.
In July Hana Faulds attended the youth camp in Atlanta and learnt lots about advocacy, which we intend to incorporate in future plans. Here is Hana’s report:
The HAE Youth Summit took place in July this year, with more than 100 HAE youth members from around the world. The Summit was run over five days, with a full itinerary involving unique, educational and fun activities for each day. Most activities were workshop based with the aim of equipping youth with essential advocacy tools. The workshops involved teambuilding activities where members were tasked to create a unique advocacy project and challenged to think outside the box when it comes to raising awareness for HAE. This encouraged younger generations to take control of their HAE by spreading awareness and contributing to the global HAE community. Additionally, we had courses, lead by professionals in their field, on advocacy resources and creative ways to spread awareness effectively: this involved photography and film classes, art, storytelling, social media tools and much more. In between educational workshops, we had time to explore Atlanta, with a private tour of the famous Braves baseball stadium, a visit to the National Center for Civil and Human Rights, ending off with a scenic 5km run through Piedmont Park to raise awareness with HAEA.
This year was the first time HAE South Africa had a representative attending the youth summit. We, as a South African community, are extremely grateful for the opportunity to learn from our global HAE family and connect our youth globally. We would like to thank HAEA and HAE International, as well as everyone involved, for paving the way forward for all HAE patients. We look forward to growing our HAE South Africa youth community.