From Sandra Agustina Nieto-Martinez, HAE Mexico (AMAEH) On November 23, 2023, the Commission for Attention to Vulnerable Groups, chaired by Representative Gabriela Sodi and held in collaboration with the Mexican Association of Hereditary Angioedema AC (AMAEH), proposed in law to declare May 16 of each year as the NATIONAL HEREDITARY ANGIOEDEMA DAY and include [...]
From Jess Myers, US HAEA hae day :-) Recap This year’s celebration of hae day :-) was especially memorable as we commemorated the 25th anniversary of the US HAEA. Participants of the 2024 hae day :-) campaign showed support for the future of the HAE community by sharing photos on social media with a [...]
From Michelle Cooper and Daphne Dumbrille, HAE Canada Spring 2024 has been exciting here at HAE Canada! As we mentioned in our last update, we started 2024 by working on our next Five-Year Strategic Plan. Board members and staff met in person and virtually in Ottawa in early May for our annual Board Retreat, [...]
From Regional Patient Advocate Fernanda De Oliveira Martins These past months, I’ve been pushing key initiatives for HAEi, raising awareness, supporting patient groups, and advocating for improved access to HAE treatment. Here’s a breakdown of my main contributions in the past few months: HAEi has developed a great tool to support Member Organizations (MO) [...]
From US HAEA The US HAEA Is Celebrating Its 25th Anniversary. Twenty-five years ago, a group of people who were diagnosed with an extremely rare and serious condition called HAE found each other online and decided that it was high time for bold action to address what they were all experiencing—pain, suffering, disability, and [...]
From Michelle Cooper, President, Daphne Dumbrille, COO, and Jacquie Badiou, Past President, HAE Canada The HAE Canada Board of Directors began 2024 thinking about the next five years. In January we had the first of five meetings to plan our next Five-Year Strategic Plan. We are keen to plan new projects, set goals and [...]
From Regional Patient Advocate Anthony J. Castaldo HAEi has frequent and productive contact with the HAE Canada (HAEC) Team, including President Michelle Cooper, Past President Jacquie Badiou, and Chief Operating Officer Daphne Dumbrille. HAEC is working to promote HAEi Advocacy Academy to their 500 members and make the HAEi Emergency Department poster available in [...]
From Regional Patient Advocate Fernanda De Oliveira Martins The 2024 HAEi Regional Conference Americas in Panama was amazing. It was a powerful source of inspiration for HAE patients, caregivers, and everyone involved with HAE. The conference equipped Member Organizations (MO) with knowledge, fostered collaboration, and empowered the MOs to continue their work and make [...]
From Jess Myers, Communication and Advocacy Specialist, US HAEA US HAEA Advocacy Update: The US HAEA advocacy team has been hard at work this year to fight against harmful policies that prevent Americans with HAE from accessing their lifesaving medications. Recently, there have been some exciting steps forward for HAE advocacy including: On October [...]
From Michelle Cooper (HAEC President and Ontario Regional Director), Jacquie Badiou, (Past President), and Daphne Dumbrille (COO), HAE Canada In October, HAE Canada President, Michelle Cooper, along with COO, Daphne Dumbrille, were given the opportunity to attend BioCryst’s first annual Patient Community Open House at their Discovery Center of Excellence Labs in Birmingham, Alabama. [...]
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
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HAE International (HAEi)
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8700 Horsens
Denmark
gro.ieah@ofni
