From CEO Fiona Wardman, HAE Australasia
HAE Australasia held its strategy meeting during January 2020. This meeting brings together the HAE Australasia Board of Directors to discuss the projects and initiatives for the coming year. The Board is excited about the new projects the organization will be working on to bring more HAE education and awareness, and resources to patients in Australia and New Zealand. Stay tuned for more details :)
HAE Australasia, with the help of Jess Bogoyevitch, launched the Youth Facebook page in February. This useful resource gives 13 to 21-year-old HAE patients and their siblings an opportunity to have a private and closed Facebook group to discuss, share stories, ask questions, and make friends in a safe place with their peers. Jess will be facilitating discussions and encouraging participation. The group is monitored to ensure everyone is kind and respectful. HAE Australasia encourages parents in Australia and New Zealand to have their children join the group.
The HAE Australasian brochures and resources such as “Someone in my family has been diagnosed with HAE” and “About Hereditary Angioedema for Patients, Carers, Families, Physicians” are now available online via https://haeaustralasia.org.au/resources/. If you are in Australia or New Zealand and you would like a hard copy simply send us a message.
HAE patients in Australia and New Zealand have an essential role in helping our organization make changes and improving our current situation. We are now working on changing the criteria for preventative treatments and gaining access to new therapies. HAE Australasia is encouraging all HAE patients who have family members, including children with HAE, to join our membership via https://haeaustralasia.org.au/stay- in-touch/become-a-member.