hae day :-) events 2021
Around the world HAEi Member Organizations arrange events to celebrate the 10th anniversary of hae day :-)
We invite you to participate if it’s relevant to you – or get inspired to create an event yourself.
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 firstname.lastname@example.org
16 May: Broadcast the documentary 'Fate Loves the Brave', Bulgaria
For the 10th anniversary of hae day :-) HAE Bulgaria, in partnership with the Bulgarian National Television, will 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 hereditary angioedema in Bulgaria, their hopes and dreams. The broadcast of the film on national air will take place on 16.05.2021 (Sunday) from 3.15 pm on BNT1.
HAE Bulgaria invites all people involved in the fate of patients with HAE to follow this exciting and realistic film story!
>> Follow HAE Bulgaria on Facebook
16 May: Premiere of “Unpredictable”, a documentary developed by AEDAF, Spain
Aedaf Angioedema in Spain is pleased to invite you to the premiere of “Unpredictable”, a documentary developed by AEDAF, with the collaboration of Takeda.
The documentary, starring 3 AEDAF partners, real HAE patients, addresses their daily reality, premieres on World Hereditary Angioedema Day
Date: 16 May
Time: 5:00 p.m. local time (Spain)
The documentary also includes Dr. Teresa Caballero, expert in hereditary angioedema of the Allergy Service of the Hospital Universitario La Paz
16 May: Event by Brazilian Study Group on Hereditary Angioedema, Gebraeh
Come to know more about the disease and help spread information about HAE – event by Brazilian Study Group on Hereditary Angioedema, Gebraeh
Date: 16 May
Time: 14.30 UTC + 02-17.00 UTC + 02
16 May: Facebook live discussion, Panama
In the framework of hae day :-) the Directorate of Culture and Citizen Education in Panama invites you to the Conversation “Not all swelling is an allergic reaction.”
Date: 16 May
Time: 5:00 p.m. local time
Place: Facebook Live – Mupa Culture
16 May: Release of dance video with HAE poem in North Macedonia
A dance video with HAE poem will be released on HAE Day 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.
16 May: 2021 US HAEA Virtual Summit Series: Take action for HAE
In light of Covid-19 restrictions, the US HAE Association (HAEA) reimagined and designed an innovative alternative to our in-person bi-annual conference. We are, therefore, very pleased to announce the 2021 US HAEA Virtual Summit Series, which will take place from May-August 2021.
The Virtual Summit Series will be presented in one-day events throughout the summer, beginning with the May 16th, 2021 celebration of hae day :-). Each of these one day events will present engaging and informative live and pre-recorded sessions available through our new, visually appealing, and easy to use virtual platform.
Recognizing the differences in time zones, the live programs will be recorded and made available (along with all pre-recorded sessions) the day after the event so that you can view at your convenience through the US HAEA Summit web portal.
Anyone interested in getting access to the programs and important information presented during the Virtual Summit is encouraged to register yourself and all members of your household.
Sunday, May 16, 2021 7:00 PM – 9:00 PM ET hae day : -) Take Action for HAE
7:00 – 8:00 PM Virtual Conference Kickoff US HAEA President, Tony Castaldo, discusses the remarkable improvements in the HAEA community’s quality of life and the importance of ongoing advocacy to protect access to HAE medicines
8:00 – 9:00 PM LIVE Breakout Session – Kahoot Virtual Game Night! Community Engagement and Fun
- Jennifer Hartstein discusses coping during a pandemic, stress, and HAE
- Grassroots Advocacy Efforts and Legislative Climate for Charitable Financial Assistance – a panel discussion with Dane Christiansen from the Health and Medicine Counsel of Washington, Jim Romano, Executive Director for United for Charitable Assistance, and John Williamson, US HAE Advocate
- Youth Corner – Virtual ‘Capitol Hill’ Launch Party – exclusive reading of Nico’s Story, the third book in the HAEA Children’s Book Series. Everyone who attends will receive a FREE copy of Nico’s Story.
>> Receive your exclusive access code to participate in the 2021 US HAEA Virtual Summit Series
15 May: Virtual Event in South America and Mexico
HAE organizations from South America and Mexico celebrate the 10th Anniversary of HAE Day in a virtual event!
Time: Saturday 15 May
4:00 PM at Colombia, Mexico, Peru
5:00 PM at Paraguay, Venezuela
6:00 PM at Argentina, Brazil, Uruguay
Place: Zoom platform
Language: Spanish and Portuguese
Topic: 10 years of HAE Day. For the first time, HAE organizations from South America and Mexico come together to commemorate the 10th Anniversary of HAE Day. Join the online conversation to get to know us, share and continue advancing in the search for a better future.
15 May: Virtual Patient Information Update, Canada
Since we still cannot host an in-person Update in Manitoba, HAE Canada will instead hold a Virtual Patient Information Update. Having the Update over Zoom allows us to open up registration to the entire membership.
HAE Canada members are invited to join us for an afternoon listening to fantastic presenters. The focus will be on access to current and upcoming HAE treatments, with time for speakers to answer pre-submitted questions after their presentation. Attendees will also have the opportunity to listen to a fellow patient’s perspective on living with HAE.
Date: 15 May, 2021
Time: 11:30am CDT
Place: live on Zoom
15 May: Virtual Patient Day in Germany
HAE-Vereinigung invite patients and care givers in Germany to a virtual patient day.
Time: Saturday 15 May, 10.00-14.00 CET
Place: Online – place to be published later
Topic: WE AND HAE: Together we can do it – right now! In German: WIR UND HAE: Gemeinsam schaffen wir das – gerade jetzt!
More information on HAE-Vereinigung’s website hae-online.de and their Facebook page
15 May: Patients' event in Australia
HAE Australasia is running an event for Australian patients on Saturday 15th May to have an open discussion about our experiences living with HAE in Australia.
From managing symptoms, access to treatment, and the impact of HAE on our health and wellbeing. The results of the discussion will be shared with our Government funding bodies via a video and executive summary.
25 April: Live online event for youngsters in Scandinavia
HAEScan invite ALL youngsters aged 12-26 years to participate in a LIVE event on Instagram.
Time: Sunday 25 April, 14.00-15.00 CET
Place: Online on Instagram @HAEScandinavia
Topic: We will talk about the campaign that HAEi has made and introduce our version where together we can collect steps and contribute to the walk around the world for HAE. In addition, in this event we will offer an easy joint yoga session for all levels as a start to our joint collection of steps.
Feel free to join – or contact Victoria and Nanna from HAE Scandinavia if you need more information.
24 April: Live online event for youngsters in the HAEi Community
The HAEi Youngsters Community invites ALL youngsters to participate in a LIVE event on Instagram.
Time: Saturday 24 April, 16:00 CET/10:00 ET (4 PM CET/10 AM ET)
Place: Online on Instagram @HAEi Youngsters
Topic: Together we will do a light workout and everybody and every level can join. So grap your mats – we can’t wait to see you there.
10 April: Online bingo in Peru
AEH Peru want to start the activities for hae day :-) by organising a bingo game. The funds collected will be invested in the AEH KIDS project that allows AEH Peru to create awareness from early childhood.
Time: Saturday 10 April at 6.00 pm local time
For more information, please see AEH Peru’s Facebook page