From Soojin Min, HAE Korea I hope this letter finds you well. Congratulations on the 2024 hae day :-) event on its remarkable achievement in Korea. I am pleased to inform you that the number of steps for hae day :-) has reached 435,890, with more than 120 people participating. Our patient association gathered [...]
From Regional Patient Advocate Lim Yong Hao The month of May holds special significance for the HAE community as hae day :-) is on 16 May. As a relatively new regional patient advocate (RPA), I was eager to see how to use this opportunity to bring the patient community closer and to raise awareness [...]
From Regional Patient Advocates Anthony J. Castaldo and Henrik Balle Boysen As many other Regional Patient Advocates mention, a focus of our activity with countries in these regions over the past months has been toward the 2024 HAEi Global Leadership Workshop. We’re delighted to see leaders from our organizations in North America and South [...]
From Regional Patient Advocate Fiona Wardman In May, I engaged in various activities across my Asia Pacific region to advance HAE initiatives: I worked closely with the HAEi conference team to ensure the Afghanistan patient lead could register for the 2024 HAEi Global Leadership Workshop with a travel grant and coupon code In Bangladesh, [...]
From HAE Japan (HAEJ) This past year, we have placed an emphasis on having smaller meetings in regional areas. In addition to our main meetings in Tokyo and Osaka, we have also had smaller meetings in Okinawa, Hiroshima, Kyoto, and Sapporo. These smaller meetings have allowed us to meet patients who generally would not [...]
From Regional Patient Advocate Lim Yong Hao The new year is a natural juncture for reflecting on the year that has just ended and thinking about the prospects for the year ahead. I was very fortunate to end 2023 on a high note with an invitation to speak on patient advocacy at the LeadHAE [...]
From Regional Patient Advocates Anthony J. Castaldo and Henrik Balle Boysen We are very excited to report on great progress in the Southeast Asia region. Late last year, we held meetings with both the patient organization and physicians in Thailand. The 2023 HAEi Regional Conference APAC, which took place in Bangkok in March 2023, [...]
From Regional Patient Advocate Fiona Wardman During the last few months, I have been working closely with South Africa and India. They are working towards impactful patient meetings aimed at bolstering support and awareness for HAE patients. These gatherings will serve as crucial platforms for patients, caregivers, and healthcare professionals to come together, share [...]
From Chen Jyun-Ting and Lim Yong Hao One of the biggest highlights in Taiwan in 2023 is the boost in the number of HAE-knowledgeable doctors and healthcare professionals. This happened because of training workshops organized and conducted by Dr. Shyur and colleagues, with the support of CSL Behring. The workshops were conducted between May [...]
From Soojin Min, HAE Korea Start of Welfare for the Weak! National Assembly Debate to Improve the Quality of Life of Patients with Rare Diseases in Medical Blind Spots: On Tuesday, 12 September, The Korean Society of Genetic Angioma held a policy discussion at the National Assembly Hall in Korea to find ways to [...]
HAE International is a global non-profit network of member organizations dedicated to raising awareness of hereditary angioedema and improving the lives of people with HAE.
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