hae day :-) activities
HAEi’s Member Organizations have had amazing awareness activities for hae day :-) over the years. Enjoy this selection, which we hope will get you inspired for this year.
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 hello@haeday.org
Activities in 2023
hae day :-) family day in Peru
On Sunday, 7 May, HAE Peru has arranged a family day to celebrate hae day :-) with horse shows, a mini farm, dances, and games.
>> Read more about HAE Peru on their website and social media platforms
hae day :-) initiatives in HAE South Africa
This year, HAE South Africa encourages patients, caregivers, and doctors to join in the fun and add their activities to the hae day :-) Activity Challenge. Reminders are regularly sent to their WhatsApp group and shared via social media channels.
Rare Diseases South Africa has supported our #active4HAE challenge by sharing our media posts on their “Rare Aware” media pages.
From the 1st of May, in the run-up to hae day :-), HAE South Africa will begin sharing a series of patient stories as well as introducing their partners and colleagues from the medical and rare disease industry who contribute a big part towards diagnosis and treatment of our patients as well as providing support and guidance for the organization.
AEDAF Camino Walk 2023 in Spain
Once again, HAE Spain, AEDAF, is organizing an hae day :-) event on the Camino de Santiago, which will take place from 13 to 17 May 2023.
>> Read more about this event in the events calendar on haei.org
Hiking Tour in North Macedonia
HAE Macedonia will celebrate hae day :-) by organizing a hiking tour on 13 May for Macedonian HAE patients and their caregivers. The tour takes the participants to Lesnovo Monastery – a historic place in North Macedonia that dates back to the 14th century.
Patients and their caregivers have been thrilled to meet outdoors to catch up and share the experiences and challenges they must overcome due to HAE.
>> Find more information about HAE Macedonia on the country page on haei.org
Walking event in South Korea
HAE Korea is celebrating hae day :-) by arranging walking events and encouraging people to participate in the hae day :-) Activity Challenge
>> Find more information about HAE Korea on the country page on haei.org
Virtual Patient Day in Germany
HAE Germany is planning a virtual patient day on 15 May, 2023 from 10 a.m
Program and further information will follow – for more information visit HAE Germany’s website and social media platforms:
Website: hae-online.de
Facebook: facebook.com/haevereinigung
Instagram: instagram.com/haedeutschland
Awareness activities in UK
For hae day :-) HAE UK is encouraging people to share positive things they can do despite having hae by printing the attached poster, taking a photo of them holding it, and sharing it on social media.
HAE UK is also holding an awareness walk as part of their patient day on 20 May, where they hope people will join for a group walk in London.
Patient Meeting in Portugal
On hae day :-) 16 May, the ACARE center of Lisbon (Centro Hospitalar Universitário Lisboa Norte) will organize a meeting with HAE patients and caregivers. HAE Portugal, ADAH, has joined this initiative and will make a presentation on the subject “unsatisfied needs of HAE patients”.
HAE Portugal’s presentation will focus on 3 main points: medication, hospitals, and doctors.
Angioedema Day in Italy
On hae day :-) 16 May, HAE Italy has arranged the event “ANGIOEDEMA DAY – yesterday – today – tomorrow”.
The event will take place in Rome at the Chamber of Deputies Press Room in Montecitorio.
Patient Information Update in Canada
To promote the Activity Challenge, HAE Canada sends an email to everyone in the HAE Canadian community, including our members, our sponsors, Canadian Blood Services, physicians, and more, announcing the annual Global Activity Challenge and encouraging everyone to add their steps for Canada. We also post information about the Challenge on our website and social media.
On April 29th, HAE Canada is hosting a Patient Information Update in Edmonton, Alberta. This hybrid event will be our first in-person event since the start of COVID. The entire membership has been sent an invite with the option of attending in person or virtually. The event will have local physicians discussing treatment options and answering questions. We are excited to also have HAEi’s Tony Castaldo presenting to our members. We will also certainly promote the Activity Challenge!
Our big news is that this year we are extremely lucky to have Tony and his HAEi colleague Henrik Balle Boysen joining the HAEC Board in Ottawa for HAE Day. On May 16th, we will all walk together and add our steps to the Activity Challenge. We are honoured they will travel to Canada on this significant day and very much looking forward to showing Tony and Henrik around our beautiful capital.
Live Q&A in Brazil
On hae day :-) Grupo de Estudos Brasileiro em Angioedema Hereditário – Gebraeh, will have a live Q&A live on HAE.
>> Read more about HAE Brazil, Abranghe, on the country page
Public Hearing in Brazil
HAE Brazil, Abranghe, has been invited to participate in the Public Hearing in Brasilia on 16 May. The organization appreciates the participation of patients from the region in this event of great importance for the future of HAE in Brazil.
Please contact abranghe@gmail.com for your application.
Activities in 2022
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
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
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).
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.
Ausstrahlung:
- SRF 1
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- Samstag, 14. Mai 2022, 18:10 – 18:40 Uhr
- Sonntag, 15. Mai 2022, 09:30 – 10:00 Uhr
- SRF Info
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- 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
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- 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.
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.
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.
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.
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.
Activities in 2021
North Macedonia
A dance video with an HAE poem was released on HAE Day 2021 on social media and other media channels in North Macedonia. In addition, HAE Macedonia prepared a surprise for HAE patients, medical staff, and supporters of hae day :-) global campaign – the patient association delivered T-shirts to them as a token of appreciation for all the support and energy that the team of HAE Macedonia receive from them.
Spain
For the 10th hae day :-) in 2021 AEDAF premiered a documentary developed with the collaboration of Takeda. The documentary, starring 3 AEDAF partners, real HAE patients, addresses their daily reality. The documentary also includes Dr. Teresa Caballero, an expert in hereditary angioedema of the Allergy Service of the Hospital Universitario La Paz.
Peru
AEH Peru organised a bingo game in 2021. The funds collected would be invested in the AEH KIDS project that allows AEH Peru to create awareness from early childhood.
HAEi Youngsters
In 2022, the HAEi Youngsters Community invited ALL youngsters to participate in a live workout event on Instagram.
Scandinavia
HAE Scandinavia held a live virtual instagram event for youngsters in 2022 to talk about the campaign that HAEi made and introduce their version where together they collected steps and contributed to the walk around the world for HAE. In addition, they offered an easy joint yoga session for all levels as a start to their joint collection of steps.
Australia
HAE Australasia ran an event for Australian patients in 2022. The patients had an open discussion about their experiences living with HAE in Australia including managing symptoms, access to treatment, and the impact of HAE on health and wellbeing. The results of the discussion would be shared with the Australian Government funding bodies via a video and executive summary.
Germany
HAE-Vereinigung invited patients and care givers in Germany to a virtual patient day in 2021. the topic was WE AND HAE: Together we can do it – right now! In German: WIR UND HAE: Gemeinsam schaffen wir das – gerade jetzt!
Canada
HAE Canada held a Virtual Patient Information Update in 2021. HAE Canada members were invited to join an afternoon meeting to hear from fantastic presenters. The focus was access to current and upcoming HAE treatments, and included time for speakers to answer pre-submitted questions after their presentation. Attendees could also listen to a fellow patient’s perspective on living with HAE.
South America and Mexico
For the first time, HAE organizations from South America and Mexico came together to commemorate the 10th Anniversary of hae day :-). The online conversation helped people get to know each other, and shared experiences to advance the search for a better future.
USA
In light of Covid-19 restrictions, the US HAE Association (HAEA) reimagined and designed an innovative alternative to their in-person bi-annual conference. The 2021 US HAEA Virtual Summit Series, took place from May-August 2021. The Virtual Summit Series was presented in one-day events throughout the summer, beginning with the May 16th, 2021 celebration of hae day :-). The topic for this summit was Take Action for HAE.
Panama
For hae day :-) the Directorate of Culture and Citizen Education in Panama invited people to join the Facebook live discussion “Not all swelling is an allergic reaction.”
Brazil
The Brazilian Study Group on Hereditary Angioedema, Gebraeh, held an online event for people to get to know more about the disease and help spread information about HAE.
Bulgaria
For the 10th anniversary of hae day :-) HAE Bulgaria, in partnership with the Bulgarian National Television, broadcast the documentary “Fate Loves the Brave” created and produced by HAE Bulgaria.
The film is an extremely influential first-person account of the fate and struggle of patients with HAE in Bulgaria, their hopes and dreams.
Belarus
The National Library in Minsk was illuminated with the hae day :-) logo
Chile
To commemorate hae day :-) 2017 HAE Chile held a meeting of patients in the VIII Region of Chile in which 13% of HAE patients are found. Information was spread and the organization met new doctors who know this pathology.
Colombia
In commemoration of hae day :-) 2020, HAE Colombia organized the first Instagram Live, in which the leader the organization, Jessika Torres spoke with the expert Dr. Margarita Olivares about HAE.
In the period leading up to hae day :-) 2020, the Colombian organization asked for pictures from the patients with the hashtag #yosoyAEHColombia (I am HAE Colombia).
Croatia
Gathered a group of patients and physicians in front of the Pedestrian Bridge in the city of Osijek. With the bridge illuminated in purple, they gave interviews for the media as a continuation of awareness activities that started with the publishing of several patient stories. Furthermore, they were guests in TV programs thus contributed to the awareness-raising following the official registration of the national organization on 29 February 2020.
Japan
A video recording with English subtitles created for hae day :-) has been uploaded on the HAE Japan’s redesigned website.
Kenya
hae day :-) 2019 in Kenya was a day to raise media awareness amongst the public on our local television networks that are seen countrywide.
HAEi’s Regional Patient Advocate, Patricia Karani, was able to feature in specific TV shows where Dr Priya Bowry, a well-known allergist in Nairobi, got to demystify the differences in types of HAE. Patricia has HAE herself and gave a patient’s perspective to living with HAE and the challenges faced by patients who have rare conditions in Kenya. These where live TV shows were a lot of people were calling in and seeking advice and clarifications on their angioedema experiences.
North Macedonia
In anticipation of hae day :-) 2018, HAE Macedonia organized a creative workshop for the youngest ones. The organzation felt that children should be taught compassion and empathy from the earliest days, and that can best be taught if they “experience” how their friends with HAE feel first hand.
On 16 May HAEi’s Regional Patient Advocate, Natasa Angjeleska, was invited on one of the national TV stations in the prime news time to speak about patients with HAE, symptoms, and therapies, activities of HAE Macedonia and the HAE Global Conference in Vienna, Austria.
Poland
HAE Poland launched the campaign “Fight for breath, withstand pain”, which aims to raise awareness about the disease, as well as ensure reimbursement for on-demand and long-term prophylaxis HAE treatments.
South Korea
For hae day :-) 2020, the South Korean HAE organization held its regular meeting as well as a celebration of the awareness day. The event took place at the Songseok Welfare Foundation in Seoul and was attended by 15 patients and guardians as well as eight officials from the foundation.
Ukraine
An online press conference was held, and there were activities with the bloggers’ community.
USA
2019 hae day :-) generated a lot of excitement in the United States with a large number of HAEA members participating in and/or hosting events, educating others, and raising HAE awareness in their communities!
The HAEA were very excited that hundreds of the new HAE E.R. Tool Kits were ordered and distributed to emergency facilities across the country.
Efforts to share this Tool Kit not only help raise HAE awareness in countless local communities but also may help identify people who have swelling symptoms and have not yet received a proper diagnosis.
Venezuela
In the time leading up to hae day :-) 2020, the Venezuelan HAE organization asked for pictures from the patients with the hashtag #yosoyAEHVenezuela (I am HAE Venezuela).
