From Chief Regional Patient Advocate Fiona Wardman
There have been a few focused tasks and projects in the Asia Pacific region over the most recent months, including the rolling out the new member only access courses in Advocacy Academy.
During this period, I have attended virtual conferences and symposiums for the region, including the APAAACI Conference, with presentations on HAE, and Pinnacle Workshops for Taiwan, South Korea, and India. I also presented in the Alnylam Pharmaceutical Patient Advocacy Leadership Workshop as a panelist with Lisa Foster (RDNZ) and Ruth Chen (TFRD) on the “Patient Voice in Drug Development and Policy in Asia Pacific”.
Patients in Hong Kong and Taiwan will have an opportunity to participate in a clinical trial for preventative therapy.
I have had meetings with member organizations in China, Bangladesh, South Korea, India, Japan, Hong Kong, Taiwan, and South Africa to work through issues and assist them in their projects.
The data collated from the HAEi Burden of Illness Study in India will be used to strengthen the message of disease burden to access treatments in India. We also plan to present a poster during a suitable conference.
I have been involved with new resources for patient awareness and education of HAE for Asia Pacific.
There has been a hive of activity around meetings with pharmaceutical companies in various countries to discuss access to medications, clinical trials, and the challenges patients face with diagnosis and treatment. It’s great to see some interest in the Asia Pacific region which has not been focused on for many years.
There is continued uptake of the HAEi TrackR app, and translations have been completed for Taiwan and Hong Kong. Also, we are in the process of translating simplified Chinese for patients in China.
The Emergency Room poster is another HAEi resource that is being utilized and made accessible in the region. We are working towards the translations, ensuring more doctors in countries within the region will have more awareness of HAE.
