2020 HAEi Virtual Regional Workshop Central Eastern Europe & Benelux – live2020-12-12T11:22:56+01:00

Welcome to the 2020 HAEi Virtual Regional Workshop Central Eastern Europe & Benelux

2020 HAEi Virtual Regional Workshop Central Eastern Europe & Benelux

The 2020 HAEi Regional Workshop Central Eastern Europe & Benelux goes VIRTUAL

It has already become a tradition that each year one of the Octobers’ weekend experiences the largest gathering of the year for HAEi Central Eastern Europe & Benelux community. Also, the part of this tradition was that the capital city of Poland hosted annual regional advocacy event, dedicated to patients, care givers and physicians, who constantly have been working in the areas of awareness, diagnosis, access and reimbursement to make HAE patients’ life better and easier. The HAEi Regional Workshop has always been a great opportunity to meet and greet the newcomers to HAEi World, as well as share experiences with current members of the global Hereditary Angioedema family. It was during these meetings that unbreakable bonds were forged, which continue to this day.

Unfortunately, due to the global pandemic situation caused by COVID-19, HAEi was forced to cancel the Workshop in the form in which it has been held so far. However, the promise HAEi gave to the patients and the importance of our Regional Advocacy efforts made HAEi decides to organize a virtual edition of this event.

The virtual world gives us more opportunities, especially to reach those patients, who have not been able to participate in such meetings so far or those who have encountered a language barrier. It is true that there is absolutely no substitute for a face-to-face meeting, but at least with today’s technology, we are able to continue our hard work. And as we all know, the hard work pays off!

Therefore, we hope that the solutions introduced by HAEi will allow many new patients, care givers and health care professionals from the region to learn more about the disease from the top HAE scientists, experts and patient advocates. Also, we hope that this workshop will allow many patients to become familiar with the projects and tools delivered by HAEi and its’ Member Organizations.

Living with HAE? You’re not alone!

Sincerely your HAEi and HAE Poland team.

Captions in 11 languages for you

We have translated all videos into languages of the region and thus you have 11 languages to choose from:

English, Armenian, Czech, Dutch, French, Georgian, Hungarian, Polish, Russian, Lithuanian and Slovak.

To choose the preferred language click on the small ‘CC‘ button in the right hand lower corner of the video.

Quick links – go directly to the track you want to explore

Welcome

HAE International

Experts

Patients

Youngsters

Welcome to the virtual workshop

In the videos below representatives from HAE International and our RPA, Michal Rutkowski welcome you to the workshop. We also invite you to view a video with highlights of last year’s workshop in Central Eastern Europe & Benelux.

Welcome message from HAEi’s Regional Patient Advocate Michal Rutkowski

Welcome messages from HAE International’s Chief RPA Fiona Wardman

Welcome messages from HAE International’s President & CEO Anthony J. Castaldo and Executive Vice President & COO Henrik Balle Boysen

Highlights of last year’s regional workshop in Warsaw, Poland

Quick links – go directly to the track you want to explore

Welcome

HAE International

Experts

Patients

Youngsters

About HAE International

In these videos you can learn more about HAEi’s Decentralized Approach, how HAEi is Building the Foundation for a Better Future and how things are progressing with the new joint venture between HAEi and GA2LEN to establish the GA2LEN/HAEi Angioedema Centers of Reference and Excellence – or in short ACARE.

HAEi’s Decentralized Approach by Chief RPA Fiona Wardman

Building the Foundation for a Better Future by HAE International’s President & CEO Anthony J. Castaldo and Executive Vice President & COO Henrik Balle Boysen

HAEi Resources by RPA Michal Rutkowski

ACARE by HAE International’s President & CEO Anthony J. Castaldo and Prof. Dr. Marcus Maurer

Quick links – go directly to the track you want to explore

Welcome

HAE International

Experts

Patients

Youngsters

Experts

In this track four leading experts give their presentations about the background of HAE, diagnosis, treatment recommendations, and pregnancy and children with HAE.

‘Background on HAE’ by Prof. Marc Riedl, MD, MS

‘Correct diagnosis approach (blood test and genetics)’ by Marcin Stobiecki, MD, PhD

‘Recommended HAE therapies: On-demand treatment & long term prophylaxis’ by prof. Markus Magerl, MD

‘Pregnant women and children with HAE’ by Henriette Farkas, MD, PhD, DSc

Quick links – go directly to the track you want to explore

Welcome

HAE International

Experts

Patients

Youngsters

Patients

In these videos you can learn more about the landscape and the work being done by HAEi ‘s Member Organizations in the countries within the regions.

HAE Belarus: Interview with President Iryna Ausianik and Team Member Viktar Lebedz

HAE Czech Republic: Interview with Team Member Adam Kolar

HAE Georgia: Interview with Prof. Maia Gotua, MD, PhD

HAE Hungary: Interview with General Secretary Zoltan Maros

HAE Kazakhstan: Interview with Patient Organisation Coordinator Sergey Morozov

HAE Lithuania: Interview with Prof. Laura Malinauskiene, MD, PhD

HAE Netherlands: Interview with President Jan van Leeuwen

HAE Russia: Interview with President Elena Bezbozhnaya and Legal Advisor Ilia Ushankov

HAE Ukraine: Interview with President Olena Mykal

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Welcome

HAE International

Experts

Patients

Youngsters

Youngsters

Enjoy the presentation of all the exiting activities of the HAEi’s Youngsters presented by Nanna Boysen, a member of the HAEi Youngsters’ Advisory Board.

HAEi Youngsters Nanna Boysen from Denmark presents the activities of the HAEi Youngsters’ Community

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Welcome

HAE International

Experts

Patients

Youngsters

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