News from South Eastern Europe

2021-04-05T20:09:33+02:00April 5, 2021|Albania, Bosnia-Herzegovina, Europe, Greece, HAEi News, Montenegro, North Macedonia, Serbia, Slovenia|

In the course of December 2020 and January 2021, I held online meetings with patient representatives from Montenegro, Greece, Albania and Bosnia and Herzegovina. Some of the patients wanted to hear details about the vaccines for COVID-19 because they feel insecure about the safety of people with HAE. I have re-shared the link to [...]

News from Central Eastern Europe, Benelux and Middle East

2021-04-05T20:05:59+02:00April 5, 2021|Belarus, Central Asia, Egypt, Europe, HAEi News, Jordan, Kasakhstan, Kazakhstan, Lithuania, Middle East, Ukraine, United Arab Emirates|

The recent months have been busy with plenty of advocacy activities for patients in Central Eastern Europe, Benelux and the Middle East. This period was full of virtual meetings with member organizations, both individual and group, during which we discussed important projects delivered and implemented by HAEi. It is truly amazing to be part [...]

News from Mediterranean, North Africa and British Isles

2021-04-05T20:00:12+02:00April 5, 2021|Africa, Algeria, Europe, France, HAEi News, Portugal|

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 [...]

News from Nordics, Germany, Austria and Switzerland

2021-04-05T19:49:09+02:00April 5, 2021|Austria, Denmark, Europe, Finland, Germany, Greenland, HAEi News, Iceland, Norway, Sweden, Switzerland, The Faroe Islands|

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 [...]

News from Austria

2021-01-19T15:34:08+02:00December 28, 2020|Austria|

From President Adelheid Huemer, HAE Austria 2020 has given us a lot of new challenges, and no real face to face meetings are possible. Therefore, 27 November 2020 HAE Austria went virtual and hosted the webinar “My good life with HAE” for its members. Prof. Dr. Marcus Maurer from Charité in Berlin, Germany spoke about [...]

News from South Eastern Europe

2020-12-21T12:57:17+02:00December 21, 2020|Bulgaria, Croatia, Europe, HAEi News, North Macedonia, Serbia, Turkey|

From Regional Patient Advocate Natasa Angjeleska I have participated in Takeda’s External Stakeholder meeting on 13 October 2020 upon invitation from the Head of the Takeda representative office in Belgrade, Aleksandar Bjelski. I was one of two patient representatives invited to speak about living with HAE, as a caregiver, but also as a patient [...]

News from Nordics & DACH

2020-12-21T12:55:22+02:00December 21, 2020|Austria, Denmark, Europe, Finland, Germany, Greenland, HAEi News, Iceland, Norway, Sweden, Switzerland, The Faroe Islands|

From Regional Patient Advocate Jørn Schultz-Boysen Having recently started up the RPA task for DACH and Nordics, I had the pleasure to meet face to face with Lucia Schauf of HAE Germany in September. I should also have met with Adelheid Huemer and Christian Müllner of HAE Austria as well as Helene Saam of [...]

News from Mediterranean, North Africa & British Isles

2020-12-21T12:42:57+02:00December 21, 2020|Africa, Europe, HAEi News, Libya, Portugal, Spain|

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 [...]