From Chief Regional Patient Advocate Fiona Wardman
For the last few months, I have focused on catching up with the Member Organizations in the Asia Pacific region and South Africa via virtual means. It seems that everyone is looking forward to once again being able to meet face-to-face.
The latest tools and resources have been implemented throughout the countries, including Advocacy Academy, TrackR and the Emergency Room Poster in several languages (for the region), social media posts for TrackR and the latest Brady Club Activity books for children.
The second round of Regional Advisory Group (RAG) questions to gain further information from Member Organizations on their current unmet needs and challenges has been rolled out. I look forward to collating the answers and creating ways to achieve better outcomes for Member Organizations.
Australia and New Zealand have held hybrid patient and carers meetings. And Australia now has its first Angioedema Centre of Reference and Excellence (ACARE) in Melbourne, Victoria.
During the HAE Korea general meeting, I was invited to present on HAEi, advocacy, and available tools and resources for patients and patient groups. I also took part in the Asia Pacific Alliance of Rare Disease Organisations (APARDO) meeting as a panellist to discuss patients and patients’ groups involved in the research and development of treatments.
The Burden of Illness survey outcomes for India was presented to Dr. Ankur Jindal from the Post Graduate Institute of Medical Education and Research (PGIMER) in Chandigarh, India. HAEi looks forward to publishing the data to assist access to modern treatments for patients in India.
HAE South Africa is going through an exciting growth period which has seen new projects and opportunities come their way. It’s such a pleasure to watch the Member Organization expand and put their thoughts and plans into action. Stay tuned for more updates!
