hae day :-) events 2022
Around the world, HAEi Member Organizations arrange events to raise awareness for hae day :-)
We invite you to participate if it’s relevant to you – or get inspired to create an event yourself.
Here are some events we have seen via social media or have been sent to us. Do you have an event that you want us to add to the list, please send us a brief note with the information needed (see events below) at email@example.com
April and May: Share your story!
On their social media platforms, the US HAEA encourage people to take part in celebrating hae day :-) by sharing their story as part of the annual campaign.
US patients can order a FREE Storytelling Toolkit with everything needed:
- Written story templates,
- Storyvine video instructions, and
- A Storytelling toolkit that will include a ring light and mini tripod to use when recording
>> Read more and register to access your FREE storytelling tools
May: Motivating Lives Events
HAE in Peru has arranged a number of activities to support hae day :-) under the headline ‘Motivando Vidas – Motivating Lives’ as you can see from the image below
Friday, 6th May, 4 pm: Storytelling (tale Motivating Lives) by zoom
Wednesday, 11th May, 4 pm: Storytelling (tale Motivating Lives) at San Isidro Children’s library
Thursday, 12th May, 5 pm: Teacher training workshop by zoom
Saturday, 14th May, 11 am: Talk ‘learning about hereditary angioedema’ by Zoom
Saturday, 14th May, 2:30 pm: Presentation Story Motivating lives
Monday, 16th May, 10 pm: Presentation and projection of the Story Motivating lives (Inclusive cinema)
Friday, 27th May, 4 pm: Storytelling Motivating lives. Clown show
>> Know more about HAE Peru – follow their social media platforms
13 May: Meeting for patients and doctors
On their social media platforms, HAE Russia invites doctors and patients and everybody to a round table meeting. The meeting is arranged together with the Russian Institute of Immunology.
The meeting will take place on 13 May at 11.00 (Moscow time, registration for the event will begin at 10.50) in a hybrid face-to-face/correspondence format. Location: Moscow, Kashirskoe sh., 24, Russia.
Everyone can join the event, including remotely online
Record via WhatsApp by phone: +7(925)079-65-22; +7(929)978-93-51
>> Read more on HAE Russias Facebook page
14 May: Dance performances in Skopje, North Macedonia
HAE Macedonia will mark this year’s hae day :-) with an event on 14 May in the EAST GATE MALL in Skopje, North Macedonia. They will have a small introduction of HAE and the hae day :-) celebration, and after the projection of their promotional video for the 10th year hae day :-) celebration, the dance studio Eureka from Skopje will have their performance with different groups of dancers. Children will get a copy of the children’s book ‘The Rare Boy and the Talkative Balloon’ and visitors of the biggest shopping mall in the capital of North Macedonia will get information about HAE.
>> Find more information about the event on HAE Macedonia’s Facebook event
14 May: Virtual Patient Day in Germany
On its social media platforms, HAE Germany has announced their virtual patient day which will take place on 14 May.
You will find a dial-in link and two links to dial in for the youngsters to exchange experiences in a few days on the organization’s homepage.
14 May: TV broadcast about HAE in Switzerland
On a Swiss national tv show, GESUNDHEITHEUTE, experts and patients will talk about HAE, their experiences and how their lives have changed with HAE, and what has helped them. Find more information about timing below (in German).
>> And find more information on HAE Switzerland’s website – a link will be available after the tv show on Sunday 15 May
Am Samstag, 14. Mai 2022, 18.10 Uhr wird im Schweizer National-Fernsehen in der SRF-Fernseh-Sendung GESUNDHEITHEUTE durch Frau Dr. Jeanne Fürst das Hereditäre Angioödem thematisiert. HAE-Patient*innen zeigen, wie sie ihren Alltag mit HAE meistern und werden zusammen mit dem HAE-Experten, PD Dr. Urs Steiner, Universitätsspital Zürich in der Sendung von ihren Erfahrungen erzählen, wie sich ihr Leben mit HAE verändert und was ihnen geholfen hat.
- SRF 1
- Samstag, 14. Mai 2022, 18:10 – 18:40 Uhr
- Sonntag, 15. Mai 2022, 09:30 – 10:00 Uhr
- SRF Info
- Sonntag, 15. Mai 2022, 20.35 Uhr – 21.05 Uhr
- Montag, 16. Mai 2022, 8:05 – 8.25 Uhr, 9:45 – 10:10 Uhr, 11:35 – 12:00 Uhr
- Website der Schweizer HAE-Vereinigung: www.hae-vereinigung.ch
- Am Sonntag, 15.Mai.2022 verlinken wir die URL dieser SRF-Fernseh-Sendung auf unserer Website
15 May: hae day :-) walk in Madrid region
HAE Spain, AEDAF, is going to organize an hae day :-) walk in the Madrid region on Sunday, 15 May. It will take place in the Dehesa de Navalvillar in the town of Colmenar Viejo. The idea is to walk through the Dehesa for about 2 hours, starting at 9:30. AEDAF hopes that many members and their family and friends from Madrid and the rest of Spain will be able to participate! At the same time, all AEDAF members who will not be able to come to Madrid are asked to join, to dedicate some time on Sunday, 15 May, to do an activity or sport, and then let us know what activity/sport they have done and the time they spent. This way, AEDAF will be able to enter on the hae day :-) website the total time dedicated as an AEDAF team.
>> Find more information on AEDAF’s Instagram page
15 May: hae day :-) walk in Venezuela
HAE Venezuela invites people for a walk on 15 May at 9.00 AM local time to celebrate hae day :-)
16 May: Video 'Angioedema faces'
HAE Portugal is preparing a video ‘Angioedema faces’, to be shared on social media. The video will feature HAE patients and will be translated to English.
>> Follow HAE Portugal on Facebook
16 May: 'Talking with Experts' in Colombia
HAE Colombia invites everybody to participate in an interesting and important talk ‘Talking with experts’ featuring Dr. Mauricio Sarrazola, who will talk about how we are doing regarding HAE in Colombia, what therapies for the management of HAE are available, and how they are influencing quality of life.
Patients will also be participating and talking about the process and the change they have perceived with these modern therapies.
>> Follow HAE Colombia on Instagram
16 May: Surprise gift for Swiss members
To mark hae day :-), the Swiss HAE association surprises all HAE-interested people with a present, which is a keychain with a small flashlight and shopping cart chip. This keychain is intended to be the daily companion so that they always have the shopping cart chip at hand, and the flashlight will always light the way for them.
16 May: Webinar in Chile
HAE Chile invites everyone to their webinar featuring Mrs. Johanna Pozo on 16 May at 20.00 local time.
>> Request a registration link to participate
16 May: Webinar in Mexico
HAE Mexico has arranged a webinar together with The Medical Association of the National Institute of Pediatrics on 16 May with an extensive program – see image to celebrate hae day :-)
>> Find more information on HAE Mexico’s page on Facebook
16 May: Webinar in Brazil
HAE Brazil (ABRANGHE) has arranged a webinar with physicians on May 16 at 7.30 PM local time.
16 May: Baking hae day :-) cakes in Scandinavia
HAE Scandinavia invites its members to join together and bake a cake. There is a recipe on their website to follow, and people are encouraged to post photos on Facebook and Instagram with the hashtag: #haedaycake.
19 May: Interview with HAE expert published in Switzerland
The Swiss magazine “Schweizer Familie” will publish an interview about HAE with Dr. Jeanne Fürst and PD Dr. Urs Steiner, University Hospital Zurich.
21 May: Tour around Qasbah City, Algeria
HAE Algeria celebrates hae day :-) with a tour around Qasbah City, Algeria on 21 May at 8.00 local time.
21, 25, 28 May: Open day at ITACA centers
In Italy, all the ITACA centers will have open days where patients can pop in at any time and talk to the doctors – on 21, 25 and 28 May.