From Regional Patient Advocate Fiona Wardman
I had planned to hold the first HAEi Regional Workshop Asia Pacific in Singapore in April; however, due to COVID-19, the workshop has been postponed until we are all safe to travel again.
I’m happy to report that we have two new patient groups in the Asia Pacific region. Angioedema Bangladesh was established in the last few months along with HAE Singapore more recently. Both new patient groups have a website (bangladesh.haei.org and haesingapore.haei.org) with HAE International, and both have set up Facebook groups. Ovi from Bangladesh and Jannah from Singapore would like to invite you to join and “like” their pages. Please see the section with news from the national organizations for more information.
HAE Pakistan has established a physician’s group. The dedicated doctors in the network are from Pakistan, Saudi Arabia, and Canada. These physicians are very interested in creating awareness, educating their peers, improving diagnosis, and helping to gain access to treatments for patients in Pakistan. I have hosted two teleconferences with the physicians, where we have put an action plan and tasks in place.
A survey will be sent to patients in India to determine the country’s burden of illness. The results will give us a starting point to work with to gain access to modern HAE treatments.