Welcome to the 2020 HAEi
Virtual Regional Workshop
South Eastern Europe
2020 HAEi Virtual Regional Workshop South Eastern Europe
The 2020 HAEi Regional Workshop South Eastern Europe goes VIRTUAL
It was never planned that we’ll start living in a time with restrictions regarding travel, gatherings, life with limited physical contact, and keeping distance due to the global pandemic caused by COVID 19. It changed our daily routines. It made us more worried, at the same time, more careful. It also forced us to start thinking that limitations only live in our minds, and if we use our imaginations, our possibilities become limitless.
We decided to start where we are. Use what we have. Do what we can!
This is how the idea to have the 2020 HAEi Virtual Regional Workshop South Eastern Europe developed, and thanks to technology, we can accommodate all of you online this year.
We know that the prospect of having a virtual workshop is not as exciting as it was in the past when we had a chance to really see and hug each other and experience so many wonderful things together. Still, if we try, we can make the best of the situation we are in. Who knows, we might learn something that we didn’t know before!
We hope you’ll enjoy the experts’ presentations, patient and youth tracks. We believe you’ll be excited to hear what our youngsters prepared and read the story of the Rare Boy and the Talkative Balloon with your children. All recordings have translation and subtitles in the language you’re familiar with, so please share it with as many patients, family members, friends, and the public to raise awareness and experience our global HAE community’s strength.
This is not all, because, at the end of the virtual workshop, we invite you to visit the virtual tour to Ohrid that we know you’re excited to see!
Remember: when plan “A” doesn’t work, don’t worry, you still have more letters to try it out :-)
Sincerely your HAEi and HAE Macedonia team.
Captions in 8 languages for you
We have translated all videos into languages of the region and thus you have 8 languages to choose from: English, Macedonian, Turkish, Serbian/Montenegrin/Bosnian/Croatian, Romanian, Greek, Bulgarian and Albanian.
To choose the preferred language click on the small ‘CC‘ button in the right hand lower corner of the video.
Welcome to the virtual workshop
In the videos below representatives from HAE International and our RPA, Natasa Angjeleska welcome you to the workshop. We also invite you to a scenic tour of beautiful Ohrid where the regional workshops of South Eastern Europe have usually organized sightseeing.
Welcome messages from HAE International: Anthony J. Castaldo, Henrik Balle Boysen, Fiona Wardman and Natasha Jovanovska Popovska
Welcome message from HAEi’s Regional Patient Advocate Natasa Angjeleska
Tour of Ohrid, North Macedonia, video produced by the.tuba.guy
About HAE International
In these videos you can learn more about HAEi’s Decentralisation 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 Decentralisation Approach by Fiona Wardman
Building the Foundation for a Better Future by Anthony J. Castaldo and Henrik Balle Boysen
ACARE by Anthony J. Castaldo and Prof. Marcus Maurer
Patients
This track contains two videos where we have discussions with patient leads from countries of the region and an interview with a licensed psychologist based on questions received from patients and family members from SEE countries.
Discussions with patient leads from 5 countries from the region: North Macedonia, Croatia, Serbia, Turkey and Bulgaria
Interview with a licensed psychologist, Radmila Zivanovic – PSIHOTERAPIKA, Skopje
Youth/children
Enjoy the discussion of HAEi’s Youngsters from Greece, Romania, Serbia, Turkey and N.Macedonia, as well as guest caregiver from USA, have a look at the posters that HAEi Youngsters from N.Macedonia and Greece prepared for the 2020 HAE Virtual Global Conference and read the story of the Rare Boy and the Talkative Balloon with your children.
HAEi Youngsters discuss about life experiences and propose some tips when living with HAE
Children’s book: Rare Boy and the Talkative Balloon
HAEi RPA, Natasa Angjeleska, has written a children’s book about a boy suffering with HAE who gets help from a Talkative Blue Balloon.
Reading the book with children makes a good starting point for a discussion about what HAE is all about.
Choose between 9 languages below.
HAEi Youngsters’ Poster Project
For the 2020 HAE Virtual Global Conference – with input from Member Organizations or Regional Patient Advocates – the Youngsters should create a digital poster about HAE in their country/region in one of HAEi’s pre-designed templates.
Youngsters from North Macedonia and Greece participated – have a look at their great work right here.
North Macedonia
Poster by
Dejan Angjeleski, Ognen Jankovski and Sofija Popovska
Greece
Poster by
Eirini Elisavet Giannakidi
Regional Experts
These presentations from physicians from the region provide information about statistics, research results and data from studies, case studies and alike.
‘HAE in Romania’ by Dr. Noemi-Anna Bara
‘Long-term prophylaxis therapy in patients the HAE in Serbia’ by Radovan Mijanovic, MD. Ph.D.
‘Past, present and future of HAE in Serbia: the patient perspective’ by Sladjana Andrejevic, MD., Ph.D.
‘HAE Preventative Therapy – More Than Attack Prevention’ by Prof. Dr. Vesna Grivcheva – Panovska
‘Which Recurrent Angioedema is HAE in Childhood?’ by Prof. Dr. Özge U. Soyer
International Experts
In this track two leading experts, Marc Riedl, MD MS, Professor of medicine, Clinical director, US HAEA Angioedema Center, University of California, San Diego and Marcus Magerl, MD, Professor of medicine, Charité Universitätsmedizin Berlin, give their presentations about HAE management and treatments of today and tomorrow.
‘Other medical conditions and management of HAE’ by Prof. Markus Magerl
‘We had a Dream – New Therapies for HAE on the Horizon’ by Prof. Marc Riedl
HAE related topics that might interest you
Global Perspectives
Magazine with timely information on the issues, activities, and events that are relevant to the global HAE community
HAEi Advocacy Academy
Courses, advocacy training, and tools to support people living with HAE and becoming an HAE advocate
HAEi Connect Member database
Free, secure online membership database and communications platform for HAEi’s member organizations
HAE Companion app
Access to HAEi’s emergency card in many languages and ACARE Centers, HAE knowledgeable hospitals and physicians
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