From President Beverley Yamamoto, HAE Japan The non-profit organization Discovery Consortium has been established in Japan to try and lift the diagnosis rate for HAE up to the kind of levels seen in North America and Europe. At the moment we estimate that only 20 % of all Japanese patients have been diagnosed. The [...]
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 [...]
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 [...]
From National contact Suchitta Kengtanyagarn, HAE Thailand: We had our first virtual meeting on hae day :-) 2021. For the meeting, we had financing support by Takeda Thailand and the volunteer speakers were Dr. Gun and Dr. Chamas as well as the President of Hemophilia Thailand to share their experience about making a patient [...]
Known for its tropical beaches, opulent royal palaces, ancient ruins, and ornate temples displaying Buddha figures, Thailand is a wonderful country to visit in Southeast Asia. Thailand is also the home of HAE Thailand, a young organization that is working closely with HAEi as it rapidly expands its membership and advocacy efforts. Suchitta Kengtanyagarn [...]
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 [...]
This input is dated May 2021 >> View content in 日本語 In brief Name for organization: NPO HAEJ 93 members at 1 Jan 2021 Name of approved HAE treatments: Berinert Firazyr Fun/interesting facts Japan consists of over 6,800 islands. Japanese trains are among the world’s most punctual: their average delay [...]
This input is dated May 2021 In brief Name for organization: HAE Singapore 2 members at 1 Jan 2021 Name of approved HAE treatments: Berinert for acute attacks in hospital Danazol – self funded Fun/interesting facts The food – chilli crab is high on the world’s most delicious food [...]
This input is dated May 2021 >> View content in 한국어 In brief Name for organization: HAE korea 22 members at 1 Jan 2021 Name of approved HAE treatments: Firazyr Prefilled Syringe Fun/interesting facts Korea is the only divided country in the world. Korean men are required to fulfill their [...]
This input is dated May 2021 >> View content in 繁體中文 In brief Name for organization: HAE Taiwan 16 members at 1 Jan 2021 Name of approved HAE treatments: Danazol Icatibant (Firazyr®) Fun/interesting facts Lots of delicious snacks. Cheaper to see a doctor. Because Taiwan is small, the transportation is [...]
