From US HAEA 2022 HAEA Year in Review: Throughout 2022, the HAEA has continued to provide our 8,000 members with programs, services, and activities that engage and unite our community, and help people maintain the hard-fought access to and reimbursement for modern HAE medicines. During the year, we developed and implemented a wide variety [...]
From Regional Patient Advocate Fernanda De Oliveira Martins It was amazing to be “Together Again” in Frankfurt, Germany, for the 2022 HAEi Global Leadership Workshop. I thank all the Member Organizations and the physicians from South America and Mexico for the effort and enthusiasm taken to the meeting, as well as the HAEi community [...]
From Ianice Viel, Communications & Digital Manager, US HAEA Youth Advocacy Month (US HAEA & HAEi Youngsters): October was HAE Youth Advocacy Month, and we invited all HAEA Youth members and HAEi Youngsters to help raise awareness by wearing blue for #BeyondHAE! This year, we made it easier than ever to participate. We invited [...]
From Daphne Dumbrille (COO) and Jacquie Badiou (President), HAE Canada: At the 2022 HAEi Global Leadership Workshop in Frankfurt, Germany, HAE Canada proudly presented a poster titled “HAE with normal C1 esterase inhibitor (HAEnC1INH): Diagnosis, treatment and attack frequency from the 2020 Canadian patient survey”. We are grateful to have been invited and appreciate [...]
From Regional Patient Advocate Fernanda De Oliveira Martins We have all been excited looking forward to the Global Leadership Workshop in Frankfurt, Germany. The idea of bringing the leaders/board members of the HAE community together in a face-to-face meeting after so much time apart has added extra energy to our region. During the months [...]
From Ianice Viel, HAE Advocate & Digital & Social Media Manager, US HAEA Guide for Women with HAE: We have exciting news for women and young girls with HAE! Women and girls have extra concerns to acknowledge understanding their HAE diagnosis. While keeping this in mind, the US HAEA has developed a comprehensive guide [...]
From COO Daphne Dumbrille and President Jacquie Badiou, HAE Canada: Exciting news: Canadian HAE patients are one step closer to gaining access to the first oral HAE treatment. Health Canada has recently approved BioCryst’s treatment, ORLADEYO® (berotralstat), for the routine prevention of HAE attacks in patients 12 years and older. HAE Canada will continue [...]
From Regional Patient Advocate Fernanda De Oliveira Martins Very recently, we welcomed Bolivia to our global HAE family as two Bolivian patients are working on establishing a patient group. A group has already been created on Facebook >> please make sure to visit and like the page. Furthermore, HAEi is in the process of [...]
From HAE Canada Our first big piece of news to share is that the HAE Canada team has blossomed to eight Board of Director members. At the 2021 Annual General Meeting on 7 December, we thanked our outgoing Board members, and welcomed our new Board members who will bring their own expertise to the [...]
From Ianice Viel, HAE Advocate & Digital & Social Media Manager: hae day :-) 2022 Awareness Campaign: The achievements of the HAE community in recent years are something to be celebrated on a national scale! Ten years ago, the HAEA recognized the need for legislative action to promote national awareness aimed at ultimately improving [...]
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)
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United States of America
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HAE International (HAEi)
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Denmark
gro.ieah@ofni
