Since the last magazine, there has been a focus on a few projects; a couple of these were the hae day :-) “Let’s Take the Next Steps” campaign and rolling out of the Regional Medical Advisory Panel project.
All the member organizations within the Asia Pacific region had their history and plans for the future highlighted on haeday.org. It was also great to see the countries get involved with logging activities and photos on the campaign website.
Member organizations have nominated Advisors for the Regional Medical Advisory Panel project, and the first meetings have taken place. Due to the time difference within the region, four separate Zoom calls have been held so far. The discussions were very insightful, with the physicians sharing their challenges and unmet needs treating HAE patients within their countries, along with talking about diagnostics, HAE protocols, and a few other topics.
Over the last few months, meetings with member organizations have taken place to discuss various projects, tools, resources, and information translation. The Brady Club coloring in pages for children has been shared.
Together with HAE Japan, a webinar was held on HAE with normal C1-INH. We were very fortunate to have Professor Hide from Japan and Professor Riedl from the USA present. The entire webinar will be available on the HAE Japan website in English and Japanese very soon. In the meantime, Professor Riedl’s presentation can be found on the HAEi website, and you can find links on the HAEi social media channels.
On hae day :-) 2021, the Hereditary Angioedema Society of India held its first conference on HAE for physicians, patients, and their family members from around the country. The Society invited me to do a presentation; the event was attended by over 300 online.
An important paper titled “Mitigating Disparity in Health Care Resources Between Countries for Management of Hereditary Angioedema” was finalized and published recently.
Over the past few months in India, we have held Zoom meetings with patients, their family members, and special guest speakers such as an Obstetrician/Gynecologist, a Mental Health Therapist, and HAE experts from within India. On behalf of HAE India and myself, I would like to thank the guest speakers for giving their time and support so generously. These meetings have been beneficial, so we have invited patients and their family members from Pakistan, Singapore, and Bangladesh.
Dedicated discussions have been taking place for accessing treatments in India.
In partnership with the Chinese Organisation for Rare Diseases, HAE China invited me to take part in an hae day :-) patient and carers conference. The event was highly successful, with 60 people in the venue and over 450 online. Together with HAE China, HAEi is finalizing the questions for the HAEi Burden of Illness survey.
HAE Korea held an online meeting on hae day :-) where I was invited to give the opening address.
I was included as one of the three member organization leads from three points of the globe to take part in the HAE Connect hae day :-) initiative for Takeda. I presented on behalf of HAE Australasia.
A new pilot project in partnership with HAEi is currently being planned and finalized. I look forward to sharing more information about this exciting project in the next issue of Global Perspectives.
HAE Australasia was planning on holding the 2021 conference as a virtual event. The plans have been updated to hold a hybrid meeting to allow patients and their families to gather in a few states around Australia. A separate in-person meeting is being planned in New Zealand.