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 [...]
This input is dated May 2021 >> View content in Français In brief Name for organization: Association of Patients with Angioedema (AMSAO) Number of members at 1 Jan 2021: 300 families Name of approved HAE treatments: Takhzyro Firazyr Berinert Ruconest Cinryze Berotralstat Fun/interesting facts We support democracy [...]
In February, HAE France (AMSAO) presented a video conference meeting with the adult and pediatric team from the angioedema reference center CREAK in Grenoble. The event was intended for children or adolescents and their parents as it enabled the sharing of information and experiences between caregivers and patients. Dr. Boccon-Gibod talked about the 130 [...]
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 The ACARE Center initiative has been presented to all the countries in the region, and it has been well received. We already have ACARE Centers set up in the United Kingdom, France, Spain, and Portugal and I am expecting that more will be settled by the end of [...]
A good handful of HAE Care Centers in France have been added to the HAE International map – please see https://haei.org/hae-member-countries/france.
From Regional Patient Advocate Maria Ferron: HAE France (AMSAO) held a meeting in Lyon that brought together patients, doctors and staff of the reference centre. Following this, they held a meeting for the members of the association. The meeting was a great opportunity to discuss a number of topics including diagnosis and emergency treatments, along [...]
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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