hae day :-) events 2023
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 a brief note with information like date, location/country, and a brief description (see events below) to email@example.com
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.
>> Find more information about HAE South Africa on haei.org, where you can also find links to the social media channels
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:
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 Portucal
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 firstname.lastname@example.org for your application.
April and May: #Active4HAE activity challenge
We – HAEi – encourage everyone to participate in all types of activity – physical activities and those helping overall wellbeing. Any activity time reported on this website will be converted into steps, and the total will power us around the World. Regularly participating in activities and recording the time spent will ensure your efforts count. You can also share photos of your activities, earn badges, and join a team if you want to.
In the past, we have generated millions of steps, enough to walk around Earth’s circumference several times. Will you be #Active4HAE and join us this year?