From Regional Patient Advocate Jørn Schultz-Boysen Over the past months, the main focus has been the 2023 HAEi Regional Conference EMEA in Munich, Germany, 1-3 September 2023. You can read a lot more about the conference and the impact it has made amongst patients, caregivers, healthcare professionals, and representatives from the pharmaceutical companies in [...]
From Regional Patient Advocate Jørn Schultz-Boysen Following the 2022 HAEi Global Leadership Workshop, there has been a lot of dialogue around many of the items and offerings that were presented in Frankfurt, Germany. Not least around HAE TrackR, the app that enables patients to take control of their HAE by registering acute and prophylactic [...]
From Regional Patient Advocate Jørn Schultz-Boysen The primary objective for the last three months was the 2022 HAEi Global Leadership Workshop in Frankfurt, Germany. September with the preparations, October with the actual workshop, and then the follow-up. The workshop itself was a very successful event – not only for HAEi but certainly also for [...]
From Regional Patient Advocate Jørn Schultz-Boysen The Regional Medical Advisory Panel (RMAP) for my region is still being put together. Yet another country has found its RMAP, which is great – for other countries, we are waiting for a confirmation on who should join. The first round of dialogue has already been going on. [...]
From Regional Patient Advocate Jørn Schultz-Boysen We are still working on bringing together the Regional Medical Advisory Panel for the region. Some doctors are on board, and for some countries, we are waiting for a confirmation of who should join. The first round of dialogue has already been ongoing. Still, it will be great [...]
From Regional Patient Advocate Jørn Schultz-Boysen The Regional Medical Advisory Panel (RMAP) is still taking form for the region. While some doctors have already agreed to participate, some countries are still in dialogue. The first dialogue is ongoing for the panelists who have joined, and interesting work and findings are already coming in. I [...]
After an amazing and successful hae day :-) with lots of activities from HAE patients, caregivers, health care professionals and industry, it continues to be wonderful reading about all the countries that participated on haei.org. The information about the countries, from past to present and looking ahead towards the next ten years is both [...]
This input is dated May 2021 >> View content in Deutsch In brief Name for organization: HAE Vereinigung e.V. 300 members at 1 Jan 2021 Name of approved HAE treatments: Berinert 500, 1500, 2000, 3000 Cinryze Firazyr Ruconest Takhyro Fun/interesting facts We have the so-called 5th season, [...]
A lot of things have been going on in my region in March, April and May. Much is, of course, related to the hae day :-) celebration that has kept so many of us busy with all kinds of activities. It’s been amazing to see a great number of people from many countries join [...]
It has been a pleasure starting as the Regional Patient Advocate for the Nordics and Germany, Austria and Switzerland. It is fantastic to meet – mostly online – with many of the member organizations’ representatives as there are so many things to talk about. And not least for me to learn from these amazing [...]
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.
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