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.

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.

>> Watch the documentary on YouTube

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.

In 2022, the HAEi Youngsters Community invited ALL youngsters to participate in a live workout event on Instagram.

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.

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.

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!

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.

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.

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.

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.”

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.

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.

The National Library in Minsk was illuminated with the hae day :-) logo

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.

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).

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.

A video recording with English subtitles created for hae day :-) has been uploaded on the HAE Japan’s redesigned website.

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.

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.

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.

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.

An online press conference was held, and there were activities with the bloggers’ community.

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.