16 May is now recognized as the official annual awareness day for HAE. After a lot of planning, the very first hae day :-) took place in 2012. The activity for hae day :-) in our early years was to cover the world with smiles via selfies uploaded to haeday.org. In 2016, we updated this to be more active and launched our Global Walk activity campaign.
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.
Henrik: We’re delighted with the response to hae day :-) from the HAE community. Together, we are a stronger and more powerful advocacy force and this collaboration will help us to reach our goals of improved time to diagnosis, and consistent access to lifesaving therapies for everyone with HAE.
2012: HAEi organizes the first HAE Global Conference, in Copenhagen, Denmark
The first HAE Global Conference welcomes 350 people with HAE and carers, scientists and healthcare professionals and industry representatives from over 25 countries to share ideas and strategies to advance HAE “Advocacy and Access”.
Tony: Our HAE Global Conference is a tremendous forum to meet, share ideas and develop our advocacy. It facilitates greater interaction between patients, the scientific and medical community, and the pharmaceutical manufacturers, leading to innovative and aggressive strategies for more timely diagnosis and wider access to life-saving HAE therapies.
2012: We publish our first newsletter – this later becomes our quarterly magazine Global Perspectives
Communication with our member organizations, members and the wider HAE community is vital. We start with a single sheet newsletter delivered electronically and this has grown to a 70-page quarterly magazine, packed with global HAE news, patient stories, and updates on modern medication developments and from HAEi and the HAE community around the world.
Tony: Global Perspectives brings hope to people with HAE wherever they are. We’re incredibly proud to deliver such a helpful resource to over 2500 people each quarter.
2014: The second HAE Global Conference is held in Washington D.C., USA
Around 450 delegates from more than 30 countries attend the second HAE Global Conference. The focus is “Setting New Standards” and HAE advocates have the opportunity to assess the state of HAE care in their countries and discuss strategies for making improvements with colleagues from other countries.
Henrik: This conference served as an incubator for developing creative collaborations and innovative approaches to improving HAE care throughout the world. Delegates were inspired to translate the knowledge and motivation from the Conference, into action to improve diagnosis and access to life-saving HAE therapies.
2016: Third HAE Global Conference takes place in Madrid, Spain including the first ever Youngsters Track
Some 525 patients, caregivers, physicians, scientists, and pharmaceutical industry representatives from 50 countries create a unique environment for sharing ideas. The agenda comprises vital topics such as the scientific frontiers of HAE research, challenges encountered in broadening access to HAE medicines, and the power of patient advocacy. This is also the first Youngsters Track, where 30 youngsters from around the world take part in activities specifically designed for them.
Henrik: This conference embodied unity, shared purpose, motivation for action and hope for the future. Participants left inspired to transform what they’d learned into systematic action aimed at improving quality of life (QoL) for people with HAE in their home countries.
2016: The first HAE Global Walk for hae day :-) including the HAEi and AEDAF Camino Walk
In 2016 HAEi introduces the HAE Global Walk. This unite people around a worldwide step challenge to ultimately raise awareness for HAE as part of our celebrations for hae day :-)
Anyone, anywhere can join in and add their steps to the global count; either on their own or in groups. This is the start of the activity challenge for hae day :-) and the annual HAE Global Walk, which in 2021 has had a special update for our 10th hae day :-)
Fiona: A wonderful group activity was the Camino Walk during the three days before the 2016 HAE Global Conference. Eighty people with HAE and their caregivers walked the legendary Camino de Santiago in northern Spain. In total, these pilgrims walked 4,000,000 steps!
2016: HAEi appoints the first of our Regional Patient Advocates (RPA)
Click on the badge on the globe to know more about the RPA of that region.
HAEi recognizes that to better serve our member organizations, we needed to have a presence where they are. This is the start of the RPA Program and 5 regional representatives are initially appointed. Today we have 8 RPAs, led by Chief RPA Fiona Wardman. RPAs constantly strive to improve the situation for all HAE friends, wherever they are in the world. They are the operational backbone of our organization.
Fiona: At the start, the primary task for RPAs was supporting existing member organizations. Soon RPAs were helping patients to form patient groups in countries where a member organization was not yet established. I’m very proud of the program and the positive impact we know our RPAs have; they are our eyes and ears on the ground, they hear to the challenges in our regions and help to deliver positive change.
2016: The first HAEi Regional Workshops are held for South Eastern Europe and Central Eastern Europe
It is not possible for everyone to attend our Global Conferences. HAEi’s Regional Workshop program is the opportunity for people from member organization countries within a region to get together to exchange experiences and ideas, to learn from regional and global experts in HAE and to hear about the latest HAEi and HAE news. South Eastern Europe and Central Eastern Europe Regional Workshops take place in person, each year, until 2020 where they are held virtually.
Tony: Our Regional Workshops serve as motivation and inspiration for patients to organize activities and seek options for improved diagnosis, treatment and quality of life (QoL). All participants have the chance to gain confidence and skills in self-advocacy and how they can work with HAE motivated and knowledgeable physicians in order to get support from the government.
2017: HAEi designed and hosted websites for member organizations go live!
A key goal of HAEi is to support our member organizations with specially designed tools and resources, to promote HAE education and support activities to help people with HAE and their families around the world.
Designing and hosting a website can be expensive and time-consuming for a patient organization. HAEi creates a simple, tailored and free solution for our member organizations to help them be visible online.
By 16 May 2021, 54 member organizations use HAEi to host their websites.
Henrik: Developing tools to assist the daily activities of our member organizations will always be a priority for HAEi. We are proud to have launched this service and delighted to support so many member organizations in this way.
2017: The first Youngsters Summer Camp takes place in Frankfurt, Germany
Around 100 youngsters from 27 countries participate in a weekend camp filled with discussions about HAE, presentations with well-known HAE physicians, laughter and many new friendships.
Tony: The Youngsters’ Track at the 2016 HAE Global Conference showed us that the young people with HAE are curious to both know more and be involved in the community. The successful Summer Camp told us we’d started a journey with our Youngsters to become our HAE advocates of tomorrow.
2018: HAEi holds the fourth HAE Global Conference in Vienna, Austria
The 2018 HAE Global Conference is our largest gathering to date and designed around the practical theme of “Take Control of HAE”. Around 735 people representing 57 countries take part in the Conference, which includes the most extensive scientific track to date; 125 physicians and researchers.
Tony: The 2018 conference was a success on all levels; education, advocacy, practical skills, making connections and sharing experiences. We again saw incredible things happen when young minds came together, resulting in the official launch of HAEi Youngsters’ Community for young people with HAE, caregivers, siblings and friends.
2018: Introduction of HAEi Connect, a cloud-based member database
HAEi Connect is a free, secure, GDPR compliant, easy to use membership database and communication platform available for all our member countries to use. At 16 May 2021, 30 countries are using HAEi Connect.
Fiona: HAEi Connect was the product of working with and listening to our member organizations. The Regional Patient Advocates observed the challenges of building and maintaining a national membership database first-hand, and we knew it was time to find a better solution.
2019: HAEi is registered as a non-profit corporation in Virginia, USA
In 2018, the member organizations unanimously pass a resolution that taskes the HAEi Executive Committee to reduce the amount of income tax and value-added tax HAEi pays. The USA is identified as the only stable country globally where a registered charitable organization can be both tax and VAT exempt, with no requirements for any specific USA involvement in that charity (by either USA citizens or USA businesses). As a result, in 2019 HAEi is officially registered as a charitable organization in the USA.
2019: The initial shipment of modern HAE medication from our Global Access Program (GAP) is delivered to South Africa
Modern HAE medication is not available in every country. HAEi introduces the HAEi Global Access Program (HAEi GAP) in 2015, to provide a regulatory compliant opportunity and mechanism for physicians in countries without approved modern HAE medications, to access modern HAE medication for their patients. This is an ambitious program and through continued collaboration with our partners Pharming and Inceptua, and the hard work of Professor Jonny Peter, we are able to provide the first shipment of medication to South Africa in 2019.
Henrik: I want to thank our pharmaceutical partner Pharming for their commitment to the program from the start. Since our success in South Africa, we have been working to expand the program, both regarding countries reached and the number of pharmaceutical companies taking part in HAEi GAP.
2019: The first HAE Youngsters Advocacy Workshop takes place in Atlanta, Georgia, USA
Over 100 members of the HAEi Youngster’s Community and the HAEA Youth Community are participating. Over the course of the Workshop, they learn more about advocacy and awareness raising and are provided practical tools to support their own advocacy efforts in the future.
Fiona: Incredible things happen when young minds come together! We were all blown away by the creativity and ability of our young HAE advocates and look forward to seeing what they achieve with the skills they have learned.
2019: HAEi partners with GA2LEN to establish the GA2LEN/HAEi Angioedema Centers of Reference and Excellence (ACARE)
The joint venture GA2LEN (a non-profit organization of leading clinical and research facilities in the field of allergy and asthma) fulfils HAEi’s longstanding goal of establishing a worldwide network of accredited angioedema care centers. The GA2LEN and HAEi accreditation is based on 32 requirements that must be met for a clinic or hospital to become an ACARE center. The requirements include a multidisciplinary approach, structured and valid protocols of diagnosis and management, assessment of patient satisfaction and unmet needs, a “never give up” attitude, knowledge and use of current terminology and classification of angioedema, family screening and cooperation with the patient organization in their country.
Henrik: Establishing ACARE through partnership with GA2LEN has given us an inclusive certified accreditation program. ACARE aims to be a worldwide network of specialized angioedema (and within that, HAE) treatment centers, so any center in any country can apply.
The HAE Heatmap Project is in the pilot phase. We are testing the viability of a survey research approach to estimate the incidence of people with undiagnosed HAE visiting health services in a pilot country. Ultimately generating a heatmap representation of the suspicion of HAE around the health service locations. The project pilots an approach in one country and will outline the transferability of the process to other countries, developed or developing, in a report. The results from the pilot will be assessed for publication. This project is delayed due to COVID-19 restrictions.
2020: Our eight RPAs establish Regional Advisory Groups, one for each of our regions
In 2018, the member organizations unanimously vote to broaden governance in HAEi by establishing Regional Advisory Groups (RAGs). This initiative is rolled out in 2020. It is a key component of our decentralized approach to advocacy and support, with a targeted focus on each country and region’s needs. RAGs are made up of patients or family members nominated as the Advisor for their country, by that country’s member organization. The Advisors meet several times a year with their RPA to discuss each country and region’s challenges and unmet needs.
Fiona: The information and outcomes from these meetings is invaluable. It provides HAEi’s Leadership with on-the-ground knowledge to be able to adjust existing programs and services or establish new projects and initiatives to best meet the needs expressed by the Advisors.
2020: We create Medical Advisory Panels in each of our eight regions. Professor Marcus Maurer is appointed HAEi’s Chief Medical Advisor
HAEi’s Regional Medical Advisory Panels (RMAPs) continue our decentralized approach to serving the global HAE community. The RMAPs provide an environment to understand the physician viewpoint regarding challenges that countries within a region face, with respect to HAE. Our member organizations are working with their RPAs to nominate physicians to be part of RMAPs. Each RMAP will gather physicians’ perspectives on circumstances and needs in their country/region and share this information with the member organizations and RPAs.
Fiona: This is an incredibly important initiative for us, and alongside our Regional Advisory Groups (RAGs) provides us with invaluable knowledge and insight into both individual countries and collectively as a region. Only by knowing the situation locally and regionally, can we begin to make a positive difference on the issues and concerns raised.
2020: HAEi Advocacy Academy, a cloud-based training platform, is launched
HAEi Advocacy Academy is a free, online advocacy training platform. The courses, resources and tools that are added to the platform will help both individuals and member organizations to develop skills to become more effective advocates and campaigners for people with HAE.
2020: HAEi co-authors a pharmaco- and socio-economic manuscript
After extensive peer review, the study ‘Assessing the cost and quality-of-life impact of on-demand-only medications for adults with hereditary angioedema’ is published.
The US HAE Association (HAEA) and HAEi initiate a comprehensive study to assess both on-demand treatment and use of the new preventative medicines in the real-world. Almost 750 people with HAE participate in the study. The results point to a high cost and quality of life (QoL) burden of HAE treatment with on-demand only therapy. The real-world data also reveals that the new preventive therapies yield can deliver remarkable decreases in attack frequency and statistically significant and clinically relevant improvements in patient QoL.
Authors for the paper are Henrik Balle Boysen and Deborah Corcoran from HAEi, Anthony J. Castaldo from HAEA, Bruce L. Zuraw and Sandra C. Christiansen from the Department of Medicine, University of California, USA and Christian Jervelund from Copenhagen Economics, Denmark.
2020: The 2020 HAE Global Conference goes virtual
The 2020 HAE Global Conference is due to be the largest HAE event ever, in Frankfurt, Germany. But, due to the global COVID-19 pandemic, we channel our “can-do” spirit and transform the face-to-face meeting into an exciting virtual event.
Tony: Thanks to the amazing behind-the-scenes team, our wonderful keynote speakers, experts and presenters we managed to record and upload 24 videos in less than two weeks and upload a further 17 videos for our scientific track shortly afterwards. With more than 12,200 visits to the conference website, 300 hours of streaming videos and 142,000 clicks on all conference content – it was a great success!
The HAE Companion app provides an easy way to access and store our popular emergency cards on your smartphone. When planning a trip, the relevant language cards for locations to be visited can be downloaded. HAE Companion also has contact information on ACARE centers and HAE knowledgeable hospitals and physicians worldwide. Ask the app to show the nearest HAE knowledgeable center, hospital or physician and using GoogleMaps or Apple Map, the app indicates directions and distance to the nearest place.
2020: First HAEi virtual Regional Workshops are launched
Due to the coronavirus COVID-19 pandemic, we have to change the format of our Regional Workshops, going 100% virtual.
In 2020 we hold the first Virtual Regional Workshops for South Eastern Europe as well as Central Eastern Europe and Benelux, and in March 2021, we are delighted to launch the first Regional Workshops for South America & Mexico Central America and Caribbean. Later in 2021 we will be launching a virtual workshop for Middle East North Africa and Sub Sahara Africa.
Fiona: Alongside all of our contributors, I would like to thank the RPAs for their work in delivering the Workshops. They have been deeply involved in the organization and video production for the three virtual conferences so far, and it has been a pleasure to see the tremendous results of everyone’s hard work.
2021: HAEi now serves as the global non-profit umbrella organization for 93 countries
The continuous growth of HAEi is thanks to the committed and focussed efforts of our whole team; Board of Directors, Staff, Regional Patient Advocates and everyone that has stepped forward to advocate for people with HAE in their country – thank you.
To serve 93 member organizations is an honor, but we can only talk about true success when we are able to support all people with HAE, wherever they are in the world.
Our second app, HAE TrackR, is an easy way for people with HAE to track their condition, their attacks, and their treatments; designed by patients, for patients. The app protects the user’s privacy and data. Any data collected by the app is the sole property of the user and only to be shared if the user decides to.
Tony: Many HAE friends around the globe encouraged us to introduce an electronic diary to support people with HAE – no matter where they are, what medication they have access to and what kind of electronic device they are using. The result is HAE TrackR!
Henrik: The giant steps we have taken since the first hae day :-) would not have been possible if we hadn’t done it together – people with HAE, their relatives caregivers and friends, our member organizations, physicians and other healthcare professionals, hospitals, pharmaceutical companies and HAEi. Thank you all for your wonderful collaboration!
Fiona: As we celebrate what we have achieved, we know this is not the end. There are still huge tasks ahead of us and as a team and a community, we’re ready to tackle them.
Tony: The last 10 years clearly demonstrates the power of HAEi’s global advocacy. What lies ahead is to bring proper and prompt diagnosis, modern medication and reimbursement to all people with HAE – no matter where they live.
More about hae day :-)
Who is behind hae day :-)
HAE International (HAEi) is a global non-profit network of patient associations dedicated to improving the lives of people with HAE. HAEi works to raise awareness of HAE, improve time to diagnosis, and fiercely advocate for approval and reimbursement of lifesaving therapies to everyone suffering from HAE. HAEi currently supports 99 member countries around the world.
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.
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