The past few months have been busy in the Asia Pacific region with some exciting projects going on with the member organizations. I always enjoy catching up with each of the patient leads from all the member organizations to discuss plans and how to create awareness and education opportunities and build their capacity.
I have been working with the member organizations to roll out the HAEi Regional Medical Advisory Panel (RMAP) project. Together, we are inviting physicians to take part in the Asia Pacific panel.
The member organizations are also working on rolling out the emergency room poster project where we hope to have as many hospitals and clinics as possible displaying the poster with vital information on HAE.
I have taken part in various workshops and meetings and have been part of focus groups for the Asia Pacific region with umbrella organizations such as Asia Pacific Alliance of Rare Disease Organisations (APARDO), Rare Disease International (RDI), and Eurodis in partnership with the WHO. These workshops are essential to gain information on work being done in the region. They are a great way of collaborating and catching up with other rare disease umbrella organizations and patient groups from within the region. We work together to create awareness and look at ways of overcoming the region’s challenges.
I have also written a case study on HAE in the Western Pacific region, which will be included in a report early next year to highlight HAE in this region and beyond.
HAE Bangladesh organized a call with an organization called Platform Medical and Dental Society, where we discussed raising awareness of HAE and working on ways to educate physicians on HAE in the country. The platform has access to physicians and medical students, and they will be a valuable partnership. We look forward to working with them on a number of projects very soon.
The HAE India survey has closed, and we have gained a fantastic insight into patients living with HAE in India. We had good participation response in the survey. Our next step is to report our findings and leverage the information for gaining access to modern treatments.
HAE Korea have held a patient meeting in Seoul during November. You can read more about this in the News from Member Organizations around the Globe section.
HAE China have been busy with various initiatives; you can read more about this in the News section.
HAE Indonesia now has a dedicated Facebook page. ‘Like’ the page so you can be updated at https://www.facebook.com/haeindonesia.
HAE Japan and I are working on a project that will benefit all countries in the Asia Pacific region and beyond. More information is coming soon.