Embracing Opportunities – A spotlight on EMEA subregions

Joining Michal Rutkowski and Maria Ferron, two of HAEi’s Regional Patient Advocates (RPAs) on stage were 5 patients from across the diverse EMEA region: Arbia Barhoun from Tunisia, Ana Freitas from Portugal, Lina Keneciuse from Latvia, Mihaela Shogoric from Croatia, and Janice Strydom from South Africa.

The two RPAs began by asking each patient to introduce their country and HAE organization.

Ana from Portugal spoke first. She told the audience that HAE Portugal was created in 2010. They have now reached 70 members, which was driven in no small part by the emergence of new HAE therapies in the country. There are now, she said, 2 modern therapies approved and available to patients in Portugal.

Arbia, speaking in her native Arabic, said that the Tunisian organization was likewise made up of 70 patients and a group of doctors. It exists to raise awareness of HAE and to convey patients’ voices to decision-makers to obtain better care. She indicated that an important aim beyond awareness is to address misconceptions, and that advocacy means supporting patients however they need it.

Lina described her home country, Latvia, as a small Baltic state of less than 2 million people, where there are currently 13 diagnosed HAE patients. She outlined how the current treatment options are limited: there is on-demand treatment, which the Government covers, but no long-term prophylaxis therapies. There are a few doctors who do their best. Lena felt their advocacy had made a good start and would only improve by being at the conference and sharing with those around her.

In Croatian, Mihaela told the audience that HAE Croatia was formed in February 2000 through a union of friendship and a desire to help. Currently, there are 122 patients in Croatia, up from about 60 when the organization began 25 years ago.

A similar number of patients are diagnosed in South Africa, explained Janice, but their 135 patients are from a population of more than 60 million people, meaning there are approximately 1000-1200 who remain undiagnosed. Returning to the subject of misconceptions, Janice said that some South African doctors see all swelling as an allergy and treat it as such. Additionally, there is a social stigma relating to hereditary diseases, which can prevent families from coming forward for potentially life-saving diagnostic tests. The treatment landscape is extremely limited, with only one on-demand treatment being available in two hospitals. For Janice, advocacy is about making sure everyone has a fair chance of treatment, wherever they live.

Michal and Maria moved the discussion on to achievements. Janice was the first to answer. She expressed pride in how patients across South Africa had created a feeling of belonging, and how that had taken away the loneliness that often comes with a rare disease.

‘Meeting another HAE patient or family for the first time is a really life-changing experience.’

– Janice Strydom, HAE South Africa

HAE South Africa’s receipt of its first funding was a huge step in building the community in the country. It allowed them to do some simple yet essential things to take their organization to the next level, such as upgrading the website and increasing their social media presence.

The Portuguese HAE organization was proud to make a difference in its members’ lives, especially by improving access to medication and showing that they are not alone; everyone is working to reach a crisis-free life.

Lina felt personal pride in stepping up to try to improve treatment for all patients in Latvia. She described herself as a ‘beginner’, but they are already collaborating with doctors, writing letters to the Government, and developing their website with the support of their RPA, Michal.

Lina was then asked about what keeps her motivated. Her answer was her son. She wants a better and more comfortable life for him.

Lastly, Lina was asked to share one thing she’d learned in patient advocacy. She referenced the HAEi tool HAEi FocalPoint as something new she has gained a lot from. And sometimes you try something and get only a small response, but not giving up is the most important thing.

‘Remember on the days when you wake up feeling like this isn't working and you don't know why you do it, remind yourself that success in advocacy is not about the big wins or the big projects. It's about the persistence and consistency.’

– Maria Ferron, HAEi RPA

Arbia was asked about how she remains resilient. She remarked on the importance of working towards a shared goal by making small, manageable steps. Her motivation comes from knowing that effective medicine exists. Some countries have obtained medicine. ‘We want to be like them one day,’ she said.

Similar to Lina, Arbia felt that learning to remain optimistic is crucial to advocacy. Keeping a positive attitude and working with others are essential, she said.

Mihaela said that motivating other patients to stay involved can be as simple as ensuring there’s a new venue for a meeting; a chance to socialize can help people open up and share knowledge, even talking privately with their doctors.

Mihaela was asked to explore the changing role of digital and social media in her advocacy. She stressed the continuing importance of Facebook but said that through her relationships with people in television and newspapers, she has secured media time to tell stories about HAE.

Ana shared that the support of HAEi had been extremely important to their efforts. The future opportunity is with young people. They can make a significant contribution.

‘Young people are a hope for a new vision of HAE.’

– Ana Freitas, HAE Portugal

The hope and future opportunity for Janice in South Africa is clinical trials. They already have 28 patients participating in trials, which equates to 1 in 5 diagnosed patients.

Looking ahead, Janice suggested that while countries and Member Organizations may look very different, the challenges and solutions remain the same.

All panel members were asked to sum up their vision for the future in a single word. Ana captured the spirit across the group with the word: ‘normality’.

Thanking the panel for their contributions, all the roundtable participants left the stage, and the conference closed for the day.

Raising awareness and advocating for change

First on stage, bright and early on a Saturday morning, was HAEi Regional Patient Advocacy (RPA), Natasa Angjeleska. Her talk was to focus on raising awareness and advocating for better.

For Natasa, her own advocacy journey started when her son was diagnosed as a baby. This gave her motivation, and she was fortunate to meet people from HAEi and become part of the fledgling RPA network.

The RPA network, Natasa said, is about organizing resources and supporting Member Organizations to help the whole patient community obtain diagnoses and treatment.

She said she is often asked by individuals, “What can I do?” Her response is to start somewhere, for example, just posting on social media. Explain in simple words what HAE is and how it affects you. You can reach a lot of people through your posts being shared by family and friends.

‘What next?’ she asked. Collecting data is simple and powerful. A small survey of the number of HAE attacks in her country, North Macedonia, helped to convince the Government to fund preventive treatment, where previously only on-demand medicine had been available.

‘Data creates the evidence for your arguments. You can use it to advocate on your own and in front of Governments.’

Advocacy is everyone’s responsibility. Everyone can do something; participate in conferences like EMEA, seek support from friends or co-workers, and spread the word. Building networks, Natasa felt, creates the conditions for success in advocacy.

Another way to advocate, Natasa told the audience, is by being informed. Your primary care and emergency room physicians have limited time to learn about HAE and often know little about the disease. You can easily share information to improve their understanding. HAEi offers free emergency room posters that can help doctors (and, indeed, patients) recognize HAE.

Another way to be informed is to use HAE TrackR. This free app is a comprehensive tool to track your own disease (or that of a loved one), share information about your symptoms, attacks, and treatment, and ultimately get better care. Sharing her own experience, Natasa explained how HAE TrackR had helped her son, who at the time was having frequent attacks. Having the data to show the sheer number of attacks helped her advocate for prophylactic therapy.

This individual act of advocacy became part of a larger effort, demonstrating the need to keep setting higher objectives. Initially, the focus in North Macedonia was on securing access to on-demand medication. With that success, they re-focused on preventive therapy. Over time, prophylaxis became available, but only to children. The advocacy then shifted to ensuring that everyone who needed prophylaxis could access it. Every time it meant sharing stories, campaigning on social media, and contacting policymakers. The cycle never stopped.

It can be hard, Natasa admitted. The Friday evening panel’s energy was infectious, and she was struck by how they had different experiences but were all pushing for the same or similar goals.

She ended with a quote from North Macedonian-born Mother Teresa, who said: ‘Not everyone can do great things, but everyone of us can do small things with great love.’

‘No one should feel isolated or alone. The RPAs are there for everyone. HAEi offers a vast array of tools, information, and technology to help advocates achieve their aims.’

Ahmed’s story

The audience warmly welcomed the next speaker, Ahmed Ali Abudahir, a Libyan with HAE. Sitting with him and posing some questions was HAEi Regional Patient Advocate (RPA) Maria Ferron.

Maria started by asking Ahmed about his story and his personal life.

Ahmed’s first symptoms of HAE started when he was six years old. He didn’t know what was happening. There were frequent episodes of swelling in his hands, feet, and abdomen, some so severe that they required admission to intensive care.

Despite his suffering, there were many doctors and many misdiagnoses. A proper diagnosis took nearly twenty years. This long wait for a diagnosis, Ahmed believes, is a result of doctors’ lack of awareness about HAE. Finally, a specialist in Libya diagnosed HAE solely based on the symptoms described.

Maria asked about Ahmed’s attacks now. He described up to four attacks a month, depending on stress, physical activity, any dental treatment, or seasonal illnesses like colds. Some of these attacks are mild, while others can be severe, like a throat swelling, and require time in intensive care. In Libya, access to treatment remains very difficult and very costly, which increases the burden on patients and their families, Ahmed said.

One bright spot is HAE TrackR, a free online tool that Ahmed said he uses to get a clearer picture of his symptoms and to record every attack, including severity, duration, location, and treatment. Ahmed can create a report from this data and share it with his doctor on his terms. The data belongs to the patient, Ahmed said, which means only he decides what to share.

Ahmed concluded his story by thanking the audience for allowing him to share it. He stressed the value HAE TrackR had brought to someone like him living with HAE.

Ahmed told his story in his native language, Arabic. Using the translation tool, Wordly, during the conference, participants and Maria on stage were able to follow using Wordly on their phones.

Shaping policies and working with governments

HAEi Regional Patient Advocate (RPA), Fanny Schappler, took to the stage with a mission to demystify working with Governments and shaping policy.

She began her talk by emphasizing that achieving policy change is not a short-term activity. Changing laws and improving the way officials deal with HAE patients is a long-term project. It requires, she said, for you to be in it for the long run.

‘To get the change you seek, pack plenty of energy and plan for the long haul.’

She started by defining some important terms used when the topic of policy-making comes up:

• Policy: A set of ideas or plans of what to do in a particular situation that has been officially agreed upon by a group of authorized people.
• Policy-maker: An individual or group of people who have responsibility for setting or establishing the various roles and procedures that govern a community. Policy makers shape public policy through legislation and decision-making.

To really improve the lives and quality of life for people with HAE, the long-term solution is to change policies and laws. “It is the most effective way to increase funding for HAE, resulting in improved access to diagnosis and treatment,” said Fanny. It also means change that endures. By changing the law, people now and in the years to come will receive the support they need for their HAE.

Turning to practical ways to effect change, Fanny outlined 6 steps that everyone can take to shape policy in their country:

1. Understand how things currently work in your country

Every country and healthcare system is different. Finding the answers to questions like ‘What is the current process for drugs to be paid for?’ and ‘What are the current laws regarding rare diseases?’ helps people understand the current situation and identify what needs to change.

2. Agree on your objectives

The second step is to understand the challenge and what you want to achieve. It might be the initial steps or a 5-year plan to effect a change in the law. You decide your vision.

3. Find people to help

Policy change is not the responsibility of a single person. Identify all those who share common interests in goals. Healthcare professionals are allies, as are other groups working in rare diseases, and the media may be campaigning for change. Map all the people and organizations who share your objectives.

4. Gather the evidence

It’s vital to have evidence. Is there already published data on the situation for people with HAE in your country? If yes, you can use that data to show the problem and the need for change. If not, then HAEi is on hand to support and advise on tools and methodologies for gathering evidence through surveys and other research initiatives.

5. Communicate the evidence

Once you have your data and facts, the hard work begins. Start with compelling stories about people’s lives and the struggles they face, backed by data and facts on what is needed to make a difference. Be clear about the change you need.

6. Never give up

Policy change is a hard job, requiring long-term dedication. Celebrate every success, no matter how small. Be aware that in democracies and Governments, there is often a lot of change, with policymakers and politicians only staying in office for a limited period. This means repeating the same message multiple times.

Fanny reminded the audience that change is possible. Case studies demonstrate how you can influence national policies. “Every single one of us can make a difference, and there is strength in unity,” she concluded.

Advocacy in action: A panel discussion

Fanny remained on stage to facilitate the next patient advocacy roundtable, joined by Michal Rutkowski, Director, Regional Advocacy Program.

The 6 patient advocates on stage for the session were Janice Strydom from HAE South Africa, Trine Balle Boysen from HAE Scandinavia, Bettina Carty of HAE Ireland, Dominika Słodka of Swelling Beautifully (HAE Poland), Silvana Bastri of HAE Albania and Juan Carlos Valera of AEDAF (HAE Spain).

The first question was to share some information on an advocacy activity from their respective organizations, including goals, actions, and outcomes.

Janice from South Africa spoke first. In the course of a Government decision about the availability of a modern on-demand medication, they noticed that the entire patient community had been reduced to statistics and numbers. The aim was to give HAE a real face and create empathy for patients. A series of patient videos was produced, showcasing the range of HAE and the diverse spectrum of people across South Africa affected by the disease. These included a young girl struggling to fit in with her peers at school, and a man fired from his job because of the visual symptoms of an HAE attack. Janice also told the audience that their most impactful video was of a man who had lost his daughter to an HAE attack while she was at school. “The impact of the videos was remarkable,” said Janice, “It moved our patients from being a page in a textbook to being real people deserving of urgent support.”

Trine from HAE Scandinavia gave a different perspective. For her, the challenge is motivating people to stay involved in advocacy, as countries across Scandinavia have access to modern medication and the opportunity to be well-treated. A young person suggested the idea of an app to support people with HAE as part of their HAEi LEAP project. The organization saw the app as a tool to help people remain engaged and was delighted to support the youngster with this as their LEAP project. The app, “Sums Up” was created to be a friend in the pocket when needed, offering support during challenging situations in life. It is now available on key mobile platforms.

In Spain, Juan Carlos spoke about the importance of their regular regional meetings. “These have been a considerable success,” he said, “but this year we took an extra step.” AEDAF organized a charity concert with a military band, which was also recorded for social media. In addition to the usual information sharing of a meeting, this concert provided a new way to reach people with messages about HAE.

From Ireland, Bettina discussed an awareness-raising campaign called “I Am Number 17.” This was a pharmaceutical company campaign, which told the story of people with rare diseases such as HAE, who make up 1 in every 17 people. Each patient in the campaign had a photographic portrait taken, and their story written up. These have been placed in public parks in the capital, Dublin, and are now in the national football stadium. For Bettina, it was an opportunity to bring HAE into the public eye. “If even 2 or 3 people recognise the symptoms in themselves, that will be a success,” she said. A book has also been produced for hospitals and clinicians, further sharing these vital stories.

From Poland, Dominika indicated that engaging young people was their priority. They created two workshops to ask youngsters about their needs and wants, as well as their shared difficulties. As a result, the organization facilitated a summer camp that brought young people together to freely and openly discuss their lives and challenges. The camp led to a fantastic community that has created two magazines and is giving young people the sense that there is something produced just for them.

Silvana from HAE Albania told the audience that they have been campaigning for more than 3 years for access to HAE-specific treatment. In that time, Silvana said that there had been 3 deaths from HAE in Albania. It was urgent to get treatment and dignity for people. Similar to HAE South Africa, the organization developed videos in which patients shared their stories to bring to life how people with HAE live. The stories included people who had to leave Albania to receive treatment. Ultimately, it was possible to sit down with the Ministry of Health and begin to discuss the needs of people with HAE.

Turning to challenges, Fanny and Michal asked the panel for their recollections about obstacles and what they had done to overcome them.

Juan Carlos said that in his organization, it is seen as best to approach problems step-by-step. That way, people can help out a little at a time. He recalled that Fanny had advised that advocacy is a marathon, not a sprint. “We must be prepared to keep going,” he said.

Dominika and Trine experienced shared challenges in working with young people. HAE Poland adjusted their language to ensure the summer camp spoke directly to the youngsters, making them feel like it was something they wanted to be a part of. It was about being patient and taking the time to make sure young people understood. Trine said that HAE Scandinavia created a clear plan with the youngster and checked in often; everyone was aware of what needed to be done and when.

For Bettina, the biggest challenge was that the Irish organization was relatively new, making it tricky to get new people involved. “To overcome this took courage to say yes to opportunities,” she said, “no matter how scared or uncomfortable it might feel.” It meant participating in the 1 in 17 project and having her photograph displayed in public.

In South Africa, Janice noted that courage is also a challenge. With their video project, it was essential to empower patients to tell their story with confidence. “It can be tough to look back over a life with HAE and all the setbacks,” she said, “especially for the first time.” The solution included a clear explanation of every stage, and ensured each patient had control over how much of their story they wanted to share. It gave people a sense of trust. Once people had shared their stories, they felt less passive and more that they had taken an active part in shaping the future.

The conversation moved into a more rapid-fire mode. The participants shared what they had learned and would like to share with other HAE advocates.

• For Dominika, it was about accepting that things wouldn’t be easy; they would take time, be patient, and have empathy.
• In Ireland, Bettina reiterated her message of saying yes to challenges and opportunities. “Go for it,” she said.
• Juan Carlos echoed his fellow panellists and said, “Never give up, keep going; difficulties are good, as it means that when success comes, it is all the more powerful.”
• Janice felt that the decision to hand control to their patients was a significant turning point. It meant that their powerful emotional stories could come through most clearly.
• In Albania, Silvana said it was vital to know they are not alone. They may be a small group, but through HAEi, they had powerful support. Natasa Angjeleska, their HAEi Regional Patient Advocate, was present during discussions with the Ministry of Health and has an extraordinary impact.

‘It’s better to do something than to do nothing at all. Be patient and never give up.’

– Trine Balle Boysen, HAE Scandinavia

A message from BioCryst

Delegates welcomed some new and familiar faces from the pharmaceutical company BioCryst, the Diamond Sponsor of the 2025 HAEi Regional Conference EMEA.

Charlie Gayer, the Chief Commercial Officer for BioCryst, led the 3-strong presentation team. Next to him were Abid Karim, General Manager for Europe, and Sandra Nestler-Parr, the Value and Patient Access Lead, who greeted the audience in a wide range of European languages.

Charlie gave a brief history of BioCryst, sharing that in 2019, the entire company, comprising fewer than 100 people, attended the US HAEA Summit. They were there, he said, to thank the patient community, something that remains at the heart of the organization.

‘We’ve always been so thankful to the HAE patient community, which continues to inspire us.’

– Charlie Gayer, BioCryst

The company has grown significantly since 2019 and today has around 500 employees globally, with approximately 100 supporting the HAE community in Europe. That group of people is now transitioning to work as part of a company called Neopharmed Gentili, an Italian pharmaceutical company based in Milan. The team will continue to support the HAE community and aim to help people with other rare diseases across Europe. Charlie confirmed the commitment to HAE remains unchanged.

And, Sandra noted, that commitment begins with market access. Across the EMEA region, their oral HAE treatment is available in 28 countries and counting. This level of access is just the start, with expansion in access the goal of BioCryst and Neopharmed Gentili.

‘Let’s be absolutely clear, without the amazing advocacy efforts of HAEi and its Member Organizations, we would not have been nearly so successful in our efforts.’

– Charlie Gayer, Biocryst

The BioCryst team recounted how their CEO, Jon Stonehouse, had made a further commitment: they would bring their drug to countries around the world, regardless of their ability to pay. This promise is now beginning to come true, with pilot programs in place in certain countries, and the 105 HAEi Member Organizations providing a starting map of all the countries where the company hopes to bring its medicine.

The BioCryst delegation left the stage, expressing their gratitude for attending the meeting and thanking the participants for their time.

An HAE journey and journeys with HAE: Furkhanda’s story

A British HAE patient took the audience on a journey through her life and how she manages overseas trips with her condition and medication.

Furkhanda Haxton told her fellow patients and caregivers that she is 56 years old, divorced, and lives near Glasgow in Scotland.

Although she is currently unable to work due to several medical conditions, Furkhanda has held a variety of jobs within the UK National Health Service, call centers, and supermarkets, all of which she enjoyed. Currently, she is actively involved in voluntary roles with older people, as well as contributing her time and skills to her national HAE organization, HAE UK, which she has been a part of since its inception around 15 years ago.

Before her diagnosis, Furkhanda recalls a life much like everyone else’s. Stress, dental treatment, and puberty didn’t trigger an attack. But, shortly after starting university and meeting the man who would become her husband, she began on the combined contraceptive pill. Within a month, the day after seeing the dentist, she suffered a facial swelling, which horrified her. She ended up in hospital, but it was presumed the dental anaesthetic caused the swelling. It was the first of many trips to a hospital.

Thankfully, she said, a consultant familiar with HAE saw her. He considered her symptoms and the fact that her mother had had similar swells, along with blood test results, before telling her she had HAE. It was within 10 months of her initial symptoms, which she admits is very quick.

A concern was her family. Furkhanda knew her mother had swellings, but had never seen a doctor or been to a hospital, which she felt may have been due to being part of the Muslim community. At the time of her diagnosis, Furkhanda had lost contact with her family; her determination to help her loved ones saw her write to every family doctor in the area to ask them if her family were patients. Doing this led to a diagnosis for her mother and her youngest sister.

After her diagnosis, Furkhanda started the treatment available: high-dose anabolic steroids. There was little understanding of this treatment in the context of HAE, and she was unaware of the potential side effects. She gained weight, had increased body and facial hair, and suffered episodes of intense anger, which endangered her boyfriend during an argument. She stopped the anabolic steroids.

Ill health meant Furkhanda couldn’t continue at university. However, her care improved after she switched to an immunologist who was already treating other patients with HAE. Furkhanda felt this doctor listened to her opinion, and her care improved. Sadly, this changed when she married, moved, and started a new job in one week, but, remarkably, “I didn’t have any swellings at that time,” she said. Her new consultant in Cardiff seemed to be more concerned about the cost of HAE treatment than her care. Ever resourceful, Furkhanda crossed the border with England to see a different consultant and receive the HAE-specific treatment she needed.

Furkhanda mentioned her experience with the menopause, and that she has been able to tolerate oestrogen gel and patches without triggering an HAE attack.

Furkhanda was at the start of HAE UK, attending the very first meeting where setting up a charity was discussed. Now, she is an administrator of the HAE UK Facebook community. She actively looks out for patient questions, offering guidance and answering their queries.

Turning from her HAE journey to journeys with HAE, Furkhanda recounted her first foreign trip to the Philippines. She looks back at how challenging it would’ve been if she’d experienced a swell there, but at that point, her HAE was better controlled. She admits to ‘good fortune’ while on the trip.

Furkhanda and HAEi’s top travel tips

Furkhanda provided a series of top tips for all people with HAE when traveling abroad, which HAEi completely endorses. Her checklist is:

1. Contact your doctors. Request a letter explaining HAE, the necessary medication, and how it is safe (and essential) that you carry it in a cabin bag.
2. Pack your medication in a separate bag and clearly label each treatment with your name. If possible, ensure you have an extra supply of medicine as a precaution.
3. Get travel insurance and ensure you declare all your medical conditions. People have shared horror stories about insurers denying claims or coverage because something wasn’t clear.
4. When flying, ask to be allowed on the flight early. Boarding early ensures medication is more likely to be directly to hand, and not stowed elsewhere in the aircraft’s overhead lockers.
5. Use the HAEi Companion App and HAEi Emergency Cards. Furkhanda uses these to explain HAE in local languages, and you can save the Emergency Cards on a phone for immediate access. The app also provides the locations of HAE centers worldwide.
6. Be aware that a long journey can lead to tiredness, frustration, and irritability, all of which can trigger an HAE attack. Ensure that on-demand treatment is available whenever possible.

The audience offered a prolonged round of applause for Furkhanda’s honest and practical story.

Stigma and cultural challenges: People with HAE panel discussion

‘Surround yourself with people who believe in you, and that support can make all the difference. You don't need a miracle. You are your miracle.’

– Jovana Cvetkovic, HAE Serbia

For this session, a group of HAE patients and advocates from across the EMEA region gathered on stage to discuss how stigma and cultural barriers can affect the lives of people with HAE, even impacting whether they come forward for diagnosis or treatment.

HAEi Regional Patient Advocates (RPAs), Patricia Karani and Natasa Angjeleska, sat down with Ersan Sevinç from HAE Türkiye, Imad El Aouni from HAE Morocco, Jovana Cvetkovic from HAE Serbia, Yasmine Said from HAE Comoros, and Mona Askar from HAE Saudi Arabia.

The initial question asked about the challenges people with HAE face. Mona highlighted that some doctors dismissed her HAE as allergies. This delayed receiving treatment and increased her fear, especially when an attack left her in the emergency room. One of her family members died from HAE, which made it all the worse. She also raised a topic which was discussed later, that guilt about the disease can affect a person’s life decisions, such as marriage or raising children.

For Jovana, people’s first reaction to HAE is confusion. They don’t understand but want to help, so they offer advice about things like healers, herbal remedies, or prayers. People are not always negative, but a lack of understanding can lead to misunderstandings. In the past, she said her advocacy work had led people to judge her, which she said was painful and unfair.

Ersan echoed the need for people in Türkiye to think about HAE in terms of what is generally understood. He suggested people are open to learn, but words like ‘genetic mutation’ can confuse.

For Yasmin, who spoke throughout in her first language of French, one of the main challenges is the lack of knowledge among physicians, which leads to delayed diagnosis. In her case, the diagnosis took 20 years. She had to educate herself to explain it to doctors. Today, things are better, she said.

Mona echoed these experiences and said that misunderstandings around HAE also delayed proper diagnosis and treatment.

Moving on to tackle stigma directly, Imad was asked if he ever felt judged or blamed for his HAE. His response was to tell the story of another patient. It was her wedding day, and she suffered an attack for no reason. Sadly, the ceremony had to be cancelled. There were 300 guests, and the husband’s family didn’t understand HAE. They accused her of not taking precautions to prevent what they thought was just an allergy. Then there were arguments about future children and the risk of passing the disease on.

Yasmin said she had accepted the stigma that HAE caused for her family. However, she said that they learned to live with it. Yasmin’s husband provided a lot of support, and she ultimately decided not to suffer from HAE but to live with it.

‘It’s not the disease that makes me who I am, but I make the disease what it is.’

– Yasmin Said, HAE Comoros

Jovana described Serbia as a place where stigma often shows up in healthcare. One patient told her that he had lost friends after his HAE diagnosis, as they thought the condition was contagious. Others experienced a different problem. As the disease is often invisible, people don’t believe HAE patients are really ill; patients are accused of exaggerating or lying, which adds an extra layer of difficulty to living with HAE.

Ersan agreed with this point, especially with work. People don’t understand that you can recover quickly from an attack after taking medication. However, he could appreciate their point of view, as they don’t experience the condition.

Moving on to cultural beliefs, Ersan discussed how both European and Asian cultures influence Türkiye. In some parts of the country, there is more focus on traditional medicine, and also a deep concern about having healthy genes, which can affect marriage prospects and even starting a family.

Likewise, Imad suggested that in Morocco, some people focus on medical science while others seek wisdom in their traditional beliefs. This, he suggested, had meant people only went to see doctors when their traditional medicine had not worked.

Yasmin shared her own experience where she had to try traditional remedies first, as her family wanted to try everything possible before consulting doctors. Ultimately, she said everyone saw that remedies weren’t working and turned to medical treatment. Like other HAE patient advocates, Yasmin said people often shared their own traditional remedies. She occasionally tells people a different explanation for her HAE attacks, such as insect bites or stomach aches; Yasmin knows that isn’t right, but it can feel overwhelming to be explaining the disease to others constantly.

Asked about how openly HAE can be discussed in his community, Imad echoed Yasmin’s viewpoint. Either you take time to explain the whole story, or you invent something like an allergy, as it’s simpler.

In Saudi Arabia, there is little openness to discuss illness, Mona said. This is because illness is seen as a sign of weakness. The same thing happens in Serbia, Jovana said. It can get so bad that people choose not to go to doctors or take medication because of the shame attached to rare diseases like HAE. This can result in tragedy, with one patient dying because they pretended HAE didn’t exist because of the stigma.

Ersan added that in Türkiye, a young man died from HAE while performing his national service in the military. This led to people with HAE being excused from military service. However, Ersan knew of one young man who hid his HAE to serve in the forces and be part of his community. The individual was OK, but it shows how the disease can lead to people feeling excluded.

Imad from Morocco was asked about any ways he addresses stigma and misunderstanding. He stressed the importance of bringing people together to fight isolation.

‘Although people with HAE in Morocco do not have treatment, we do have the power of communication. We can explain HAE to reduce stigma and fight for treatment.’

– Imad El Aouni, HAE Morocco

Ersan reiterated the power of community. For him, being in a community is the first step, as it removes isolation. Don’t isolate yourself, he advised other patients, it makes stigma bigger. Find others who share your experiences. Likewise, Jovana recalled growing up with her HAE being a complete mystery. When she knew there were other people just like her, it was a huge relief.

‘The HAE family helped a lot. I’m not some kind of freak. Just a bit different than anyone else.’

– Jovana, HAE Serbia

Mona’s experience was to decide to live openly with her disease, as a Saudi Muslim with HAE. She believes that this illness is a test from Allah, and not a source of shame. Mona addresses stigma with knowledge and patience, and with the support of her husband and family, she is encouraged to speak freely without fear.

‘Speak up, don’t let stigma silence you.’

– Mona, HAE Saudi Arabia

Like Mona, Yasmin also gained the strength to challenge stigma from her family, especially her husband and children. She aims to keep her children from having to go through what she went through. “As strange as it seems,” she said, “HAE is a part of me and has helped shape the person I am today.”

HAEi What’s New

Executive Vice President and Chief Advocacy Officer for HAEi, Fiona Wardman, and Executive Vice President and Chief Operating Officer, Jørn Schultz-Boysen, gave a concise briefing on the latest developments in the tools, technology, and opportunities HAEi offers the community, including some projects which you might have missed.

HAEi LEAP 2026 and HAEi Youngsters Social Media Internship

HAEi LEAP is a fantastic program for young advocates aged 16-25. Global Perspectives notes that at the time of publication, the application process has closed. You can read more about HAEi LEAP here. 

In addition, a young person’s social media internship program is also offered, providing skills in social media, writing, advocacy, and working as part of the HAEi team. You can learn more about the social media internship here.

Pilot project in South America and Mexico

A pilot impact meeting was held in South America and Mexico. Member Organization (MO) leaders from across the region completed an intensive planning course to set out a 12-month advocacy plan. The meeting is designed to help MOs grow and increase advocacy confidence and skills. Although a pilot, HAEi hopes to run this project in other regions in the future, so stay tuned.

HAE videos to educate doctors across the Asia Pacific region

Working with HAE experts in the region, HAEi produced four short educational videos for healthcare professionals. These videos focused on the clinical aspects of the disease, including spotting symptoms, diagnosis, and treatment. You can see the complete set of videos here.

Tailored program in Brazzaville

To expand knowledge in an area with limited internet access, a team will take a video to hospitals across Brazzaville, the capital of the Republic of the Congo, to educate healthcare professionals. The videos show HAE symptoms, treatments, and what to do in an emergency. In just five minutes, physicians can get everything they need to know. This type of program could also be rolled out in other African countries where infrastructure may limit access to online education.

HAE guidelines for Pakistan 

Pakistan has committed HAE doctors and a patient advocacy group. HAEi is bringing these groups and more interested stakeholders together to establish a consensus on HAE guidelines specific to Pakistan that align with current practice and available treatment options in the country.

HAEi Companion and HAE TrackR apps get a refresh

Jørn highlighted that both HAEi Companion and HAE TrackR are getting updates. These include:

• An improved user interface
• Easier download of emergency cards
• Quality of life questionnaires in HAE TrackR to aid treatment optimization
• Access to notifications through emails and text messages

HAEi website and Global Perspectives

Both of HAEi’s key information resources have been made even easier to access. Global Perspectives is now fully online, and the HAEi website is easier to navigate and search. Both websites now have automated translation into your preferred language.

HAE guides in translation

Understanding HAE and Women with HAE are now available in more languages than ever before.

Clinical trial recruitment

HAEi continues to optimize its partnerships and protocols for supporting pharmaceutical company trial recruitment. HAEi is always looking to work with MOs on this, so please respond if contacted about clinical trials. Your data is handled in full compliance with data protection regulations (GDPR), and HAEi can help support patients throughout the process.

HAEi Advocacy Academy 

Whether you’ve used this resource before or not, HAEi Advocacy Academy is bigger than ever. Whether as a patient or caregiver, there’s so much education available on how to be a better advocate, with new modules and online learning being added regularly.

The HAEi Global Leadership Workshop returns in 2026 with a new name

The HAEi leaders reminded everyone that the 2026 Global Angioedema Leadership Conference (formerly the HAEi Global Leadership Workshop) will take place in March. This meeting will bring together HAE leaders from across the globe in science, medicine, and advocacy.

Support is always available

In conclusion, Fiona and Jørn referenced the bespoke support that is always available to every HAEi MO. This can include letters to governments and health ministries, and even HAEi advocates attending meetings to support MOs and share expertise and knowledge with policymakers. Just contact your RPA if you’d like to know more.