Happy birthday to HAE Hong Kong! Congratulations to the team at HAE Hong Kong for their 2nd year of dedication to improving the quality of life for patients in Hong Kong.
During the last few months, I have participated in meetings with various pharmaceutical companies to move forward access to modern therapies in the Asia Pacific region. There have been Zoom meetings with the member organizations in the region on things like the burden of illness study as well as general catchups for patients and their family members.
I was invited to be an Honorary Lifetime Member on behalf of the HAE (Physicians) Society of India. I was asked to contribute to the newsletter on the importance of collaboration.
Australia and New Zealand have some large projects going on – information on these can be found in the country section.
The Regional Medical Advisory Panelists who were unable to participate in the first round of meetings have submitted their answers via email.
The TrackR app information has been sent out to all countries in my region and posted on social media platforms within the region. The app works well and is helpful and easy for patients to record their attacks, treatments, and quality of life.
The Chinese Organization for Rare Disorders (CORD) invited me to participate in the 10th CORD Summit.
HAEi provided letters of support for HAE Hong Kong addressed to contacts within the health ministry and other offices. The purpose of the letters was to gain support for funded access to modern therapy. Patients can currently buy their own supply of on-demand treatment. Information has been given to HAE Hong Kong on administering the product, and information on HAE management plans have been shared.
HAE China is looking to roll out the Burden of Illness survey that HAEi has offered to them.
Currently, there are no known HAE patients in Sri Lanka. However, I have been in touch with a physician who wrote a paper on HAE; hopefully, this connection can assist with progress in this country.
Information and a link to an important workshop on “Importance and role of patient organizations in shaping health systems” were shared amongst the Asia Pacific countries. A whitepaper from the Asia Pacific Patient Innovation Summit which aims to serve “as a blueprint to help patient organizations improve their approach to sustainable funding, digitalization, and multi-stakeholder partnerships”. The whitepaper is very much in line with my work as a Regional Patient Advocate for the region.
I am also delighted that the HAEi Advocacy Academy has excellent content for member organizations, the exclusive access codes have been shared with each country. The content in these courses provides information and templates to overcome the unmet needs and challenges that the countries face, as noted during the Regional Advisory Group meeting. There is also general content on advocacy for anyone to access.