The Japanese National Health Insurance System (NHI) has approved the addition of oral, once-daily Orladeyo (berotralstat) from BioCryst Pharmaceuticals, Inc. to the NHI drug price list on 21 April 2021. Oral, once-daily Orladeyo was approved in Japan in January 2021 for prophylactic treatment of HAE in adults and pediatric patients 12 years and older. Orladeyo [...]
The network of ACARE centers continues to grow despite the many challenges created by COVID-19. ACARE is a joint venture with GA²LEN and HAEi that fulfills HAEi’s longstanding goal of establishing a worldwide network of accredited angioedema care centers. In 2020 and 2021, the ACARE Network launched, hosted and aired two webinar series. The [...]
HAEi friends in many countries cite the need for significant improvement in emergency room care for people with HAE. Because education is the key to better emergency care, HAEi has prepared a poster with important information on recognizing HAE and successfully treating an emergency. To ensure the most widespread use of the poster, it [...]
By Hana Faulds Hey Youngsters! What a crazy year 2020 was, right! And to that note we send our love to all of you around the globe. 2020 was the year of changes and for many that meant finding different ways to connect. Meeting online has a whole new and different meaning, hasn’t it? [...]
After the successful virtual regional workshops in South Eastern Europe and Central Eastern Europe and Benelux, HAEi is now focused on Latin America. “The Latin American workshop is the first one for this region where the working language is the presenters’ local language. The workshop brings together the Regional Patient Advocates Fernanda de Oliveira [...]
The HAEi Regional Medical Advisory Panel initiative is the next step in a decentralized approach to serve the global HAE community. The objective of the Regional Medical Advisory Panels (RMAP) is to obtain the physician viewpoint regarding challenges that countries (within a region) are facing in terms of diagnosis, education, awareness, and access to [...]
Last year the Regional Patient Advocates rolled out a new HAEi initiative called Regional Advisory Groups (RAGs) in each of the regions they represent. The initiative followed an unanimous vote by the HAEi General Assembly during the 2018 HAE Global Conference in Vienna, Austria where it was resolved to broaden HAEi Governance participation by [...]
According to HAEi President & CEO Anthony J. Castaldo, “A study of HAE medicines published by a group of economists who receive funding from the insurance industry concluded that new preventive HAE medicines are not cost-effective. The US HAE Association and HAEi joined forces in questioning the methods and conclusions of this analysis and [...]
16 May 2021 marks the 10th anniversary of the hae day :-) awareness day. For the last ten years, HAEi and its member organizations worldwide have used 16 May as a focus for raising awareness: not just on the day itself but in the weeks leading up to it. Let’s Take the Next Step [...]
I participated in an interview with Dr. Olga Barrera in Panama for a national newspaper to highlight HAE patients’ situation in the country. In Puerto Rico, I have had several communications with Dr. Rafael Zaragoza, representatives of pharmaceutical companies, lawmakers, and legislative advisers about the reconsideration of the law that would give HAE patients [...]
