From President Sarah Smith, AEDAF
Awareness day: After having to cancel its 22nd General Assembly and Annual Meeting, which was due to take place in April, and with very strict confinement measures in Spain as of mid-March due to Covid-19, AEDAF did decide to carry on with the project it had planned for hae day :-) in collaboration with Takeda. This was a video to spread knowledge and raise awareness of HAE and focused on the theme of “Somos impredecibles” (We are unpredictable). In the end it was not possible to film the video in a studio because of lockdown, so it was decided to produce the video with only one of our patient members (Carolina Zamora, the person in charge of our social networks) along with two actors. All three of them had to film their parts by themselves at home. We are very pleased with the result because this circumstance of confinement at home underlined even more the challenges of living with HAE.
Along with the video, which was posted on our website and our social networks (Facebook, Instagram and Twitter) a few days before hae day :-) 2020, we launched a challenge that consisted of making a video of yourself writing “Somos impredicibles” with your foot and sharing the video on Instagram. We have estimated a total of around 120 participants. You can see the video (including a version with English subtitles) and the explanation of the challenge on the AEDAF website: angioedema-aedaf.haei.org.
HAE Global Walk: In the end there was a very good Spanish participation in the 2020 HAE Global Walk, in spite of the strict confinement measures in place in the country through all of April and most of May. We congratulate all the walkers from Spain and around the world who took part with their steps in the HAE Global Walk for the fantastic results again this year in these most difficult of times!!
Virtual Meeting and General Assembly: Because of Covid-19, AEDAF has decided it is best not to hold any in-person meetings or workshops at least for the rest of 2020. It is planning on having a virtual Zoom meeting in late September or early October, the main topic of which will be Covid-19 and HAE and which will be combined with our 2020 General Assembly.
