The Ministry of Health, Labor and Welfare (MHLW) in Japan has granted marketing and manufacturing approval for BioCryst Pharmaceuticals, Inc.’s oral, once-daily Orladeyo (berotralstat) 150 mg for prophylactic treatment of HAE in adults and pediatric patients 12 years and older. Orladeyo is the first and only prophylactic HAE medication approved in Japan. One capsule of [...]
A recent Harris Poll, commissioned by CSL Behring, asked patients who have HAE to assess how the unpredictable condition affects them. In the survey, patients also gave their thoughts on treating the condition, which causes dangerous swelling episodes. Here are some highlights from the survey, which also included responses from physicians: More than 40% of [...]
“Have no fear. Take the vaccine.” That is, in short, the main message from HAEi’s Chief Medical Advisor Prof. Marcus Maurer, during an interview with HAEi’s President and CEO Tony Castaldo. Prof. Maurer says that there are no medical or scientific concerns preventing people with HAE from getting the COVID-19 vaccine. HAEi recommends that [...]
Intellia Therapeutics, Inc. outlines its expected 2021 milestones and strategic priorities regarding HAE therapy: “Since our founding, we set out to develop modular platform components that could serve as the engine powering an expansive portfolio of curative therapeutics. We have paved a rapid and reproducible development path for both in vivo and engineered cell therapies [...]
At times it can seem hard to keep track of all that has evolved in and around HAE over the years. Here is an overview – at least when it comes to the development of HAE International. 2002 Alarmed at the potential consequences of [...]
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 [...]
From Regional Patient Advocate Natasa Angjeleska I have participated in Takeda’s External Stakeholder meeting on 13 October 2020 upon invitation from the Head of the Takeda representative office in Belgrade, Aleksandar Bjelski. I was one of two patient representatives invited to speak about living with HAE, as a caregiver, but also as a patient [...]
From Regional Patient Advocate Jørn Schultz-Boysen Having recently started up the RPA task for DACH and Nordics, I had the pleasure to meet face to face with Lucia Schauf of HAE Germany in September. I should also have met with Adelheid Huemer and Christian Müllner of HAE Austria as well as Helene Saam of [...]
From Regional Patient Advocate Patricia Karani The COVID-19 situation in Sub-Saharan Africa is still the main focus of this region. However, I am taking advantage of any small step I can to move things forward where possible in countries like Zimbabwe, Kenya, Sudan, Nigeria, and Ghana. HAE International was able to raise awareness in [...]
From Regional Patient Advocate Javier Santana During the month of December, we are hosting another webinar in Spanish with Dr. Rafael Zaragoza on HAE and COVID-19 in order to update the HAE community from the region on the latest medical information. We expect this event will be well attended. We are also excited that [...]
