From Regional Patient Advocate Maria Ferron The main focus during these last 3 months has been the organization of the 2023 HAEi Regional Conference EMEA. After hard work and the great support provided by our HAEi Conference Operations team, it was an enormous pleasure to meet up in Munich with the patients, caregivers, and [...]
From Regional Patient Advocate Maria Ferron The 2022 HAEi Global Leadership Workshop held in October was an excellent chance for everyone to share their experiences, see all the new projects and activities HAEi has implemented, and meet face-to-face with the HAE community and stakeholders. The workshop gave the Member Organizations in the region I [...]
From Regional Patient Advocate Maria Ferron This period has been really exciting and active for several reasons. Firstly, due to changes in the pandemic situation, we are allowed to go back to more face-to-face meetings, and it is nice to see again members of our HAE community. Also, after more than two years, the [...]
From HAE Portugal (ADAH) This past December 2021, ADAH held the second online event of its annual conference, under the theme of the advantages and challenges towards the autonomy process of patients with HAE. The occasion was meant to promote the share of up-to-date scientific knowledge on the disease, while providing an opportunity for [...]
From Regional Patient Advocate Maria Ferron I am happy to announce that Lanadelumab was recently approved to be used in hospitals in Portugal. Also, from Portugal, the HAE team has been working on setting up their 2022 actions plans which among others include an HAE awareness campaign (supported with an HAEi poster), creating an [...]
From Regional Patient Advocate Maria Ferron I have been advising all the member organizations in my region about the new Advocacy Academy courses developed by HAEi. This is an excellent opportunity for national organizations to take advantage of this wonderful tool to learn how to run an organization and advocate for patients. Please don’t [...]
Over the past couple of months, work has progressed on the HAEi Virtual Workshop for the Middle East, North Africa, and Sub Sahara Africa. We have finalized the video recordings, and I have been working with the Regional Patient Advocate for Central Eastern Europe, Benelux, and the Middle East on the new website for [...]
This input is dated May 2021 >> View content in Português In brief Name for organization: ADAH 41 members at 1 Jan 2021 Name of approved HAE treatments: Berinert Firazyr Fun/interesting facts Delicious food, top quality wines, sunny weather and fun loving people. Fado – the tradicional [...]
Initially, I am happy to inform you that the HAEi Emergency Room poster is now translated into Spanish, French and Arabic. On 5 December 2020, HAE Portugal (ADAH) held its annual meeting, this time in a virtual format. Around 45 participants took part, and Raquel Oliveira, the President of HAE Brazil (Abranghe) and I [...]
From Regional Patient Advocate Maria Ferron Mauritania: Our new HAE International Poster has been sent for translation to the only contact we currently have in the country. This poster can be quite helpful to localize possible HAE patients as we are not in contact with any yet. Spain: HAE Spain (AEDAF) had their annual [...]
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
