The workshop began with an overview of HAEi’s history and the introduction to its Board of Directors and Leadership.
The next session featured a comprehensive presentation of the Services and Programs – the following is an overview of the items presented at the workshop.
HAEi Hosted Websites
“As a new HAEi Member Organization, we didn’t have any information online. HAEi helped us to create a simple website. It was so quick. People with HAE in our country can now find us, find information on HAE and join our organization. Our contact information is available for anyone to find.”
– Moazzam Farooq, Pakistan
“It was very easy and pretty fast. I sent the selected template to the team, and they launched the site in a few weeks. After two years, they migrated the site to the new multi-site platform. It was also pretty fast and smooth.”
– Zoltán Maros, Hungary
>> Read more about HAEi Hosted Websites
HAEi Connect
To this point, 32 Member Organizations are using HAEi Connect, seven more are in progress, and another seven have been reached out to.
“HAEi introduced us to the program so we could have one database with our patients in one place. Rather than Excel sheets managed by multiple members. It was also more secure for patient information.”
– Tamsin van Vlaanderen, South Africa
“I would like to say to other Member Organizations that I invite you to start to use HAEi Connect. It is easy to use, and it is a useful tool that can be used to achieve improvements for every organization.”
– Sandra Nieto, Mexico
>> Read more about HAEi Connect
Event Zoo
“Conference and meeting registration processes can be quite challenging and time-consuming if you don’t have advanced tools to do it. Event Zoo gave us the possibility to make the process easy and time affordable. And most of all Event Zoo is fully compliant with GDPR, which is so important nowadays! With Event Zoo you don’t have to deal with all the paper sheets or all the Excel files anymore. All entries arrive smoothly, and you can easily divide or select them, according to your accommodation or travel requirements. Having such a tool free of charge is priceless for Member Organizations.”
– Michal Rutkowski, Poland
HAEi Advocacy Academy
HAEi Advocacy Academy is being used by Member Organizations around the globe to help them in their advocacy efforts. Courses are developed and added based on feedback from our Member Organizations so we know we are responding to needs of our members.
>> Read more about HAEi Advocacy Academy
Emergency Card
The Emergency Card has been translated into 44 languages and is now used in 84 member countries.
>> Read more about the Emergency Cards
Emergency Room Poster
The Emergency Room Poster exists in 17 languages, comes in three sizes, and can be customized to the specific needs of a Member Organization.
>> Read more about the Emergency Room Poster
Understanding HAE
The patient guide ‘Understanding HAE’ based on requests from Member Organizations is fresh from the printshop – please see page 40 for a more comprehensive presentation of the brochure.
>> Read more about the ‘Understanding HAE’ patient guide
HAEi Youngsters
More than 350 young people with HAE are now connected via HAEi Youngsters. The youngsters’ website is currently being updated with expected launch of a Youngsters’ Hangout at the end of the month.
>> Visit the HAEi Youngsters’ website
HAE TrackR
The HAE TrackR app now has 30+ languages and will be available in an updated version before the end of the year. Among other things, it will contain a reminder for taking prophylactic treatment.
HAEi Virtual Centers
The first HAEi Virtual Center is up and running in Australia and the next one – in South Africa – is on its way.
>> Read more about the HAEi Virtual Centers
Other Services and Programs
This part of the workshop also touched on Services and Programs such as the ACARE Centers, the HAE Companion app, GAP – the HAEi Global Access Program, the Global Perspectives magazine, the annual hae day :-) as well as Patient Driven Research, Regional Advisory Groups, Regional Medical Advisory Panels, and social media.
Speaking about regional advocacy Chief Regional Patient Advocate Fiona Wardman shared her thoughts regarding a truly fantastic development:
“In 2004, we had seven Member Organizations and no Regional Patient Advocates. Ten years later, HAEi had grown to 27 members but still no RPAs. Then, in 2016 we introduced the first five RPAs, and the number of countries grew to 63 in just a couple of years. By now, we have 95 Member Organizations serviced by our eight RPAs.”
Covering the important topic of clinical trials, Henrik Balle Boysen said: “Today, we have more clinical trials than any other rare disease. This year alone, HAEi is involved in eight market research activities covering 15 countries with almost 400 patients and caregivers.”
At the end of this part of the program, Henrik Balle Boysen presented a further development of a decentralized approach to serving HAE patients and organizations across the globe: Three regional conferences in the first and second half of 2023 and the first half of 2024 – before the next Global Leadership Workshop in just two years’ time.
Scientific Poster Session
The very successful Scientific Poster Session attracted a large crowd. >> Click here for the summaries.
Regional Break-out Session
The remainder of Friday’s program was dedicated to a break-out session where the Member Organizations could exchange ideas with their HAEi Regional Patient Advocate and each other.
“There are so many useful services from HAEi. Now we just have to go home and start using them.”
“This has been an excellent workshop – especially the information on the clinical trials. Unfortunately, we haven’t had one single clinical trial in Pakistan, but I will work on that now.”
“There has been so much useful information. I have been making notes and also recording and sharing on our website so it can get to our members.”
