Welcome to the 2025 HAEi Regional Conference EMEA
Tony Castaldo, HAEi CEO and Chairman of the Board, and Henrik Balle Boysen, HAEi President, took to the stage to welcome all participants to the 2025 HAEi Regional Conference EMEA. In front of around 700 patients from more than 60 countries, caregivers, healthcare professionals, and industry supporters, Federica Braghieri and Alice Ferrari from the Italian HAE organization, A.A.E.E APS-ETS, joined Tony and Henrik on stage.
Speaking in her native language, Federica told the audience that the Italian organization was founded in 1980 by a group of 30 patients, along with Professors Angelo Agostoni and Marco Cicardi. Now, 45 years later, there are 26 specialist centers for the treatment of HAE in Italy, and approximately 1200 diagnosed patients.
‘Without knowledge, there can be no diagnosis. Without diagnosis, there can be no treatment.’
– Federica Braghieri, HAE Italy
Federica spoke about the initiatives and collaborations of the Italian organization and how they focus on patients’ well-being. She spoke of her hope for the future and thanked all who worked to improve the lives of people with HAE. She closed by welcoming everyone to Rome and wishing them a productive meeting.
Alice also welcomed participants to Rome and asked that they make themselves feel at home and part of a big family. It was Alice’s first time speaking in public, and her desire to speak on behalf of the young people living with HAE, like herself, overcame her nerves. She told the audience that being young with HAE means carrying special baggage, but it also encourages resilience, courage, and empathy. She closed her speech with words of encouragement to all: ‘I firmly believe we must look to the future positively and be the change we want to see in our own lives.”
Tony and Henrik thanked the two Italians for their welcome. They recounted the role that Italian HAE doctors and patients have played in HAE advocacy, from being among the very first national patient groups to the pivotal role of the late, great Marco Cicardi in supporting the establishment of HAEi.
The two HAEi leaders extended their own welcome, highlighting the conference’s aims and the complete alignment with the organization’s goal of gaining access to and reimbursement for life-saving and life-giving medicines. They reminded the audience how personally invested the leaders of HAEi are, as fellow patients and caregivers.
Turning to the conference agenda, both speakers highlighted the young people present in the audience and emphasized their importance for the future of advocacy. They announced that the HAEi LEAP program will take place in 2026 and that applications are now open on a dedicated website. LEAP, they explained, is an educational program for young people developed by HAEi that equips future advocates with life skills and experience in working to improve their own lives and those of others with HAE.
The scale of HAEi’s EMEA region was in the spotlight; 66 Member Organizations (MOs) and 1.5 billion people living in HAEi’s member countries across Europe, the Middle East, and Africa. Using prevalence estimates, Tony indicated that approximately 50,000 people in the region’s MO countries are likely living with HAE; yet, only 25% of these individuals (about 12,800) are currently known. It shows just how much work remains to be done.
But why is diagnosis still so low? To answer this question, Tony presented some new data on the situation across HAEi’s EMEA region. Only a few countries rated the HAE knowledge of general physicians as good or very good, and a bewildering 15 different medical specialties managed HAE across the region. This lack of knowledge and disjointed care could be hindering diagnosis.
Tony moved on to more positive news: three-quarters of MOs rated the knowledge of HAE specialists as good or very good. This forms a solid platform for improvements, said Tony. In future iterations of HAE management guidelines, there is a drive for all HAE treating physicians to consult or work with an HAE expert to ensure that everyone receives the care they need.
Moving on to treatment, Tony reminded the audience how hard the entire community has fought to create an environment that fosters research and, as a result, a variety of approved modern treatments. It is all the more remarkable, he said, when 97% of the 7000 rare diseases have no treatment at all.
An approved treatment doesn’t mean an available treatment, of course. There are countries across the region with no access to any form of HAE medication, including the non-specific therapies such as steroids and tranexamic acid.
Medicine is, of course, a potential life-saver in HAE. It is also an essential part of living a normal life with HAE, according to the MOs in the EMEA region. Almost all MOs said there was a very low likelihood of living a normal life without access to modern HAE therapies, and indeed, the absence of medication results in little chance of fulfilling life’s potential. So, the importance is well understood, Tony said.
‘The burning advocacy task that brings us all together is working towards the day when everyone with HAE has access to a modern therapy.’
We can, and we are making progress. In a 2011 survey of MOs, 45% of responding European countries had access to long-term prophylaxis and on-demand treatments. Fast forward to this year, and that number has increased to 95% of European countries with access to modern, targeted medicines for treating and preventing HAE attacks.
Tony acknowledged the very different treatment landscape outside of Europe, again drawing on MO data:
- In the Middle East and North Africa, 11 countries report access to one modern treatment, either on-demand or preventive, while seven countries have access to both.
- In Sub Sahara Africa, data indicate that two countries have access to on-demand treatment only.
These survey results represent a call to action, according to Tony. We know the challenges we face, he said.
‘The 700 HAE friends here this weekend demonstrate the growing appetite to make a difference through fierce and strategic advocacy.’
Tony concluded by inviting everyone to thank the many pharmaceutical companies that made the 2025 HAEi Regional Conference EMEA possible through their generous sponsorship:
- BioCryst, the Diamond Supporter
- CSL Behring, Pharming, and Takeda, the Gold Supporters
- Astria, Intellia, KalVista, Otsuka, and Pharvaris, the Silver Supporters
Calling keynote speaker Professor Markus Magerl to the stage, Tony and Henrik asked everyone to have fun and enjoy the conference to come.
