From Chief Regional Patient Advocate Fiona Wardman
The last few months have been busy in the countries in the Asia Pacific region and South Africa.
As the 2022 HAEi Global Leadership Workshop invitations have been sent out to the Member Organizations, there has been a lot of interest, and registrations have been completed. I’m looking forward to spending time with the Member Organization leaders from my countries in Frankfurt in October.
Clinical trials are being run in Taiwan, and Hong Kong, which brings the opportunity for patients who haven’t been on a prophylactic therapy to trial the modern therapies and (hopefully) give patients the experience of living attack free or at least a reduction in attacks.
New courses in Advocacy Academy were rolled out, including extra information like case studies for existing courses. The HAEi app TrackR is being downloaded by new patients in India and other countries to track attacks, and the emergency room poster has been translated into Mandarin.
The Asia Pacific region is seeing an increase in HAE presentations for education and awareness. The conference run by the Asia Pacific Association of Allergy, Asthma and Clinical Immunology (APAAACI) was the latest, bringing together international experts to talk about HAE.
hae day :-) 2022 was also a highlight during this period with meetings, interviews, gatherings, and media campaigns highlighting HAE and the burden of disease on our global awareness day: Australia, South Africa, South Korea, India, and China all had major events.
The HAE Society of India held its second in-person conference in Chandigarh, where HAEi presented the tools and resources useful for doctors. The results of the Indian Burden of Illness Study were also shown.
Lastly, I received the unfortunate news that one of the Patient Group Leaders in my region sadly passed away due to a throat attack. I want to stress the importance of seeking medical assistance for attacks in the face, throat, and neck – whether you have access to treatments or not. Please don’t delay getting help, and please keep advocating for modern therapies in your country.
