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 RPA Maria Ferron On 20 February 2023, the 1st HAE patient workshop organized by CSUR (Reference Centers, Services or Units of the National Health System) took place at La Paz Hospital in Madrid. Dr. Teresa Caballero was the coordinator of the course, and I had the pleasure of introducing HAEi to the attendees. [...]
From HAE Spain (AEDAF) HAE Spain (AEDAF) Camino Walk 2023: AEDAF is pleased to announce that it will be organizing another hae day :-) event on the Camino de Santiago: the HAE Spain (AEDAF) Camino Walk 2023, which will take place from 13 to 17 May 2023. The aim of hae day :-) on [...]
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 HAE Spain (AEDAF) HAE Spain (AEDAF) Camino Walk 2023: AEDAF is pleased to announce that it will be organizing another hae day :-) event on the Camino de Santiago: the HAE Spain (AEDAF) Camino Walk 2023, which will take place from 13 to 17 May 2023. The aim of hae day :-) on [...]
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 President Sarah Smith, HAE Spain (AEDAF): General Assembly & Annual Meeting: The 24th General Assembly and Annual Meeting of AEDAF took place 26 March 2022 in La Paz Hospital in Madrid. After two years of pandemic, we are very, very happy to again be able to have an in-person meeting and to see [...]
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 President Sarah Smith, HAE Spain (AEDAF) 23rd AEDAF General Assembly: Because of our decision to avoid in-person events during all of 2021 and in keeping with the Association’s Statutes, AEDAF held its 23rd General Assembly on Zoom on 11 November 2021. We are hoping that in 2022 we can resume face-to-face meetings and [...]
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 [...]
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
