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 President Beverley Yamamoto, HAE Japan As in previous years, on 22 February 2020 we hosted the Rare Disease Day event for Kobe City. Many other Rare Disease Day events had been cancelled due to the COVID-19 situation, but as ours is a relatively small event we decided to go ahead with some precautions. [...]
From President Beverley Yamamoto, HAE Japan (HAEJ): HAEJ applied for the 3rd PASE Award from EFPIA (European Federation of Pharmaceutical Industries and Associations) – PASE is Patient Advocacy Support by EFPIA. HAEJ applied for a project on paediatric HAE to do a survey to identify patients and their treatment needs as well as to carry out focus groups with families and [...]
From President Beverley Yamamoto, HAE Japan (HAEJ): Icatibant has now been approved for acute attack in Japan and now for the first time patients have access to a therapy that can self-inject. It is making a big difference to patient lives already. We are still working hard to get self-administration of C1-inhibitor approved and making [...]
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.
HAE International (HAEi)
10560 Main Street, Ste PS40
Fairfax City, VA 22030
United States of America
gro.ieah@ofni
HAE International (HAEi)
Vejlevej 16, 1.
8700 Horsens
Denmark
gro.ieah@ofni
