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
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
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.
Dejan Angjeleski, Ognen Jankovski and Sofija Popovska
Eirini Elisavet Giannakidi
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
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 Access Program
Helping to change the lives of patients with hereditary angioedema (HAE) with a medication access program
Magazine with timely information on the issues, activities, and events that are relevant to the global HAE community
HAEi Connect Member database
Free, secure online membership database and communications platform for HAEi’s member organizations
Regional Patient Advocates
Constantly strive to improve the situation for HAE friends all over the world – no matter how they are organized
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HAE Global Conference 2018
This 4th HAE conference was record breaking: A total of 736 patients and care givers participated from no less than 57 countries