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 HAE Switzerland. Unfortunately, COVID-19 yet again caused travel restrictions, so these two meetings were moved to be online instead.

Regardless, it was great to meet with the three associations to hear about all the work they have been and are doing, the current state in their countries, and to talk about some of the news and offerings from HAE International.

Some of the key points discussed with the three countries were HAEi Connect, web hosting, the Emergency Card in German, the HAE Companion app, and ACARE. Not least one of the main purposes was to get introduced to each other and to talk about the role of the RPAs and how this can be a beneficial link for all parties; how we can stay updated on activities and help each other.

Also, we have already been successful in kicking some of the tasks off that we discussed. Hence, I am happy to mention that the work of moving HAE Austria’s website to HAE International’s web hosting setup has been decided and we are taking the first steps now. Also, a demo of HAEi Connect is being set up for HAE Germany to visualize the benefits of this tool. As a very practical and very important task, we got the Emergency Card translated so that it is now available in German both on and in the HAE Companion app.

Furthermore, it’s wonderful to see that we have ACARE centers in both Austria and Germany – several in Germany, actually.

In the Nordic region, we are currently working on moving the website of HAE Finland to the hosted setup of HAE International.

For Norway and Sweden regional patient meetings are normally held in the autumn and in Denmark in late spring/early summer. Due to COVID-19, these regional meetings will be virtual instead with a lot of interesting and relevant information being shared. The planning and recording for these event are currently ongoing with a planned go live in the first quarter of 2021.

In Denmark, the first ACARE center has been accredited, and dialogue with this center is currently ongoing.

Last but not least, a callout: If you are a patient, care giver or physician treating HAE patients in Iceland, the Faroe Islands or Greenland and would like to get in touch, please do not hesitate to reach out to me. It would be great to connect with you.

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