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Perspectives Haei MAGAZINE · ISSUE 2/2021 JUNE 2021 perspectives HAEi MAGAZINE · ISSUE 2/2021 93 Member countries Now live – download today at app.haetrackr.org NEW APP! HAE TRACKR BY PATIENTS FOR PATIENTS 16 RECORD-BREAKING PATIENT STORY: CECILIA WAS CELEBRATION FOR SEARCHING FOR ANSWERS THAT YEAR 18 44 ANNIVERSARY 10TH HAE DAY :-) MAY NOT HAVE HAD A QUESTION perspectives Global Perspectives Issue 2/2021 June 2021 Cover photo HAEi launches new app: HAE TrackR – read more on page 16 Magazine staff Henrik Balle Boysen, Executive Vice President and Chief Operating Officer Rikke Sørensen, Communication Design and Graphics Manager Steen Bjerre, Communications Manager Subscription If you would like to subscribe to our magazine, please send an email to [email protected] or register directly at haei.org HAEi 2021 activities are supported by: HAEi is registered as a non-profit organization in USA HAEi is a global non-profit umbrella organization dedicated to working with a network of national HAE member organizations to raise awareness of HAE GLOBAL PERSPECTIVES · JUNE 2021 ⎮ 03 DEAR HAEi FRIENDS, A warm welcome to the second 2021 edition of Global The programs and services we offer is part of a Perspectives. I would like to start by congratulating our longstanding commitment to provide our HAEi member organizations for the unprecedented level of Youngsters with the resources and assistance to help participation in the 10th anniversary of hae day:-). The them interact with peers, better understand their HAE, HAEi community broke all prior records by recording an and learn how to advocate for themselves and others incredible 169 million steps for raising HAE awareness! in their respective countries. This full list of HAEi Clearly, the global HAE movement continues to gather Youngster programs and activities is too long for this momentum. message, but here are a few highlights: As usual, Global Perspectives provides our community • A new youngsters webpage with a comprehensive overview reflecting just about • On-line meet-ups where HAEi Youngsters can interact everything going on in the world of HAE. This issue • Social media posts on living with HAE includes very exciting information regarding the launch • Youngster produced video recordings prepared for of HAE TrackR. This secure, easy to use app (designed HAEi Regional Meetings and developed by your fellow HAE patients) helps you • Youngster’s tracks at our Global Conferences gather and record important information about your • A Special Youth Summer Workshop in Frankfurt, Germany HAE that can be shared with your physician. I also invite • A Global Youth Advocacy training and certification you to read about the two highly successful HAEi Virtual Workshop, and Regional Workshops held in Central Eastern Europe and • HAEi Advocacy Academy - an online training platform Benelux, and South America and Mexico, Central America for HAEi Youngsters wishing to learn about advocacy and the Caribbean. We also provide an overview of the 12th C1-INH Deficiency and Angioedema Workshop. HAEi Youngsters continue to be a very high priority, as evidenced by our commitment to increasing investment Furthermore, I would like to highlight the importance in training, motivating, and encouraging our future HAEi of a very special group that comprise the future HAE advocates. Nevena Tsutsumanova, HAEi’s Operations advocates and leaders – our HAEi Youngsters. The Manager, who works closely with the Youth Advisory spirit of this remarkable group is captured in a phrase Group and oversees the HAEi Youngsters program, that accompanies all of their social media and written reports that plans are well underway to significantly materials: expand our youth-related programs and services. Future issues of Global Perspectives will highlight HAEi CONNECTED BY HAE. UNITED AS A FAMILY. Youngster’s activities and accomplishments. As you will read on pages 30 through 34, the HAEi Wishing all HAEi friends throughout the globe the very Youngsters Community is an inclusive group of best, and looking forward to meeting in person again, patients, caregivers, siblings and partners between 12 hopefully in the very near future. and 25. HAEi also offers the Brady Club for children between 5 and 12, including workbooks and fun Warmest regards and please stay safe, activities helping the youngest members of the community better understand their HAE. Anthony J. Castaldo President and CEO, HAEi GLOBAL PERSPECTIVES · JUNE 2021 ⎮ 03 IN THIS ISSUE IN THIS ISSUE OF GLOBAL PERSPECTIVES 06 44 Free, secure and easy to use app.haetrackr.org 16 06 News from the HAEi regional patient 34 Kick-starting the HAEi Youngster’s advocates blog 16 HAE TrackR is now live! 25 12th C1-INH Deficiency & Angioedema Workshop 18 Record-breaking celebration for 10th hae day :-) 38 2020 HAEi virtual regional workshop Central Eastern Europe & Benelux 22 What do you want to achieve by 2030? 41 7 more centers have joined the ACARE network 30 It’s time to meet the HAEi Youngsters Advisory Group 42 Rapid development in Thailand 04 ⎮ GLOBAL PERSPECTIVES · JUNE 2021 GLOBAL PERSPECTIVES · JUNE 2021 ⎮ 05 IN THIS ISSUE 2418 18 YEAR ANNIVERSARY 35 42 44 Patient story: I was searching for 68 Medical papers answers that may not have had a question 72 Clinical trials 50 2021 HAEi virtual regional workshop 75 News from the industry South America & Mexico, Central America & Caribbean 83 Have no fear – take the vaccine 52 News from member organizations 84 HAEi around the world around the globe 67 Track your HAE with HAEi’s new app! 04 ⎮ GLOBAL PERSPECTIVES · JUNE 2021 GLOBAL PERSPECTIVES · JUNE 2021 ⎮ 05 NEWS FROM THE HAEi REGIONAL PATIENT ADVOCATES It has been truly amazing to see such a great variety of awareness activities and celebrations around the world for hae day :-) 2021! Congratulations to everyone for taking part and making the HAE awareness day such a huge success. The Regional Patient Advocates (RPAs) have been involved in many virtual events over the last few months, and given the ongoing situation with COVID-19, we are thankful to still take part in and continue to educate and create awareness worldwide. Fingers crossed that, things start to open up and we can begin to meet face to face once again. The Regional Medical Advisory Panel meetings have taken place with asking the Advisors the first round of questions. The RPAs have gathered valuable and helpful information during these meetings for HAEi to create solutions for the challenges and unmet needs that physicians in each country face when treating people with HAE. I hope you enjoy reading about the extraordinary work being done by the RPAs in each of their regions. Fiona Wardman Chief Regional Patient Advocate 06 ⎮ GLOBAL PERSPECTIVES · JUNE 2021 GLOBAL PERSPECTIVES · JUNE 2021 ⎮ 07 NEWS FROM THE HAEi REGIONAL PATIENT ADVOCATES JØRN SCHULTZ-BOYSEN NORDICS, GERMANY, AUSTRIA AND SWITZERLAND A lot of things have been going on in my region in While all these activities took the main priority, we are March, April and May. Much is, of course, related to the currently working on building the Regional Medical hae day :-) celebration that has kept so many of us busy Advisory Panel for the region. Some doctors have with all kinds of activities. It’s been amazing to see a already agreed to take part, and we are very happy great number of people from many countries join in to start this together. In some countries, we are still and create awareness for HAE. Here are a few examples: talking with doctors about their participation. • In Scandinavia, youngster representatives worked HAE TrackR – the exciting new app from HAEi where hard to raise awareness by engaging as many you, amongst other things, can track your attacks, youngsters from Sweden, Norway and Denmark as treatments and condition – is now ready. Currently, possible. Both online sessions and local individual we are working on more language versions with the activities were tracked. member organizations. • Germany hosted a wonderful virtual patient day with a lot of great information for the community. Last but not least, the Finnish website hosted on HAEi’s • Austria created a TV broadcast centering around environment is in the making and dialogue has started HAE, available online and presented during prime about the Austrian one. time on national television. • Switzerland shared a gift with all its members, one This year, HAE Scandinavia (Denmark, Norway and that could be planted and, if treated correctly, would Sweden) can celebrate its 20th anniversary. The 2021 result in a lucky clover. Scandinavian Conference by HAE Scandinavia will take place 12 to 14 November 2021 as an in-person These are just some of the activities – all over the conference at the Clarion Hotel Copenhagen Airport. region, people were busy raising awareness step by step. Finland, for instance, started a little later but still Again, a callout: If you are a patient, caregiver or managed to walk, run, cycle etc. a lot of steps! physician treating HAE patients in Iceland, the Faroe Islands or Greenland and would like to get in touch, Not to forget, building up to the hae day :-) campaign, please do not hesitate to reach out to me. It would be a lot of time and hard work was invested from all the great to connect with you. member countries to build content for the campaign website. All this content will remain and can be found under each country on haei.org. If you haven’t already done so, this is a great chance to read about the fantastic countries in all regions. Thank you to everyone who was involved in the hae day :-) campaign to make it such a great success and to be global yet still very local in all the different communities. 06 ⎮ GLOBAL PERSPECTIVES · JUNE 2021 GLOBAL PERSPECTIVES · JUNE 2021 ⎮ 07 NEWS FROM THE HAEi REGIONAL PATIENT ADVOCATES MARIA FERRON MEDITERRANEAN, NORTH AFRICA AND BRITISH ISLES During March, the World Allergy Organization (WAO) and the Pan-Arab Society of Allergy, Asthma, and Immunology (PASAAI) organized the WAO Pan Arab Region Virtual Congress with several sessions, including one for HAE.
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