As it’s our 10th year of hae day :-), we have some great awareness raising activity inspiration from our HAEi Member Organizations.
Here’s a selection from different countries over previous hae days :-)
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.
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.
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).
More about hae day :-)
About hae day :-)
hae day :-) awareness tools
Who is behind hae day :-)
HAE International (HAEi) is a global non-profit network of patient associations dedicated to raising awareness of hereditary angioedema (HAE) around the world and improving the lives of people with HAE.
The annual hae day :-) aims to raise awareness worldwide
hae day :-) unites the HAE community with 16 May as a focus for activities to raise awareness of HAE amongst the general public, healthcare professionals, healthcare decision makers and industry representatives.