Nine regional breakout sessions across two hotels allowed every attending patient advocate to have the chance to discuss, brainstorm, and exchange knowledge. Global Perspectives was able to drop into each session and saw colorful balloons strewn across the floor in one session. In another, chairs were arranged into a circle to aid discussion. In a third, participants were hearing a presentation on the latest developments in their region. To share what happened in each session, Global Perspectives spoke to each RPA breakout lead and patient advocates from around the globe.

RPAs and Member Organizations tell their story

It was clear that no two breakout sessions were entirely the same. Whilst some key resources were shared with all participants, notably a new Patient Travel and Relocation Guide and a Virtual Meeting Resource, each RPA’s session was tailored to the needs and interests of their Member Organizations (MO).

Central America and the Caribbean
Javier Santana told Global Perspectives that each country discussed strategies and future plans. Participants offered their support to other countries, sharing resources, knowledge, and ideas to help others.

From this breakout, we heard from Tarya Corrales from Costa Rica. Working with huge energy, HAE Costa Rica now supports more than 75 patients. Tarya is also HAEi’s youngest MO lead. Global Perspectives started by asking her what she took from the breakout session. She told us: ‘It was very helpful to listen to other countries’ advances and ideas on how to apply them in Costa Rica.’ Her reason for being at the GLW will likely resonate with many, she wanted to take action as a patient. Global Perspectives asked about the situation in Costa Rica. Tarya told us: ‘Costa Rica has made positive progress. There are two treatments available for patients with HAE.’ Finally, Tarya told us that she would like other people with HAE to know they are not alone. She said: ‘There are thousands of people with HAE who have been able to get ahead and be happy.’

Across Asia
In the Asia group, facilitated by Yong Hao Lim, there was a similar spirit of collaboration; however, the focus was on regional priorities such as patients’ mental health and how best to engage with pharmaceutical companies.

Global Perspectives got the views of Makiko Matsuyama from HAE Japan. She referenced the fact there were similar challenges across Asia. She said: ‘The situation regarding HAE treatment in Japan is currently one of the more advanced in the world. We learned about the challenges facing other countries in the same Asian region, which are similar to those we faced many years ago, so I felt that sharing best practices would be helpful to other countries. We need to work together even more.’

Both in the breakout sessions and in subsequent discussions, Makiko told us that everyone has similar challenges, but hearing how others have overcome them inspires them to action. In particular, HAE Japan was encouraged to proceed with an event for children based on colleagues’ successes.

Finally, she said, stigma remains an issue in Japan, and one they are actively working to address by showing people living healthy lives, and that diagnosis and treatment can translate to a life free from attacks. You can learn more about HAE Japan’s work on stigma in ‘Cultural sensitivity and stigma reduction strategies’ as Makiko spoke during one of the Masterclasses on the main stage.

Scandinavia and German-speaking Europe
In the session focused on Scandinavian and the German-speaking nations in Europe (Germany, Austria, and Switzerland), Global Perspectives heard about the struggles for recognition of the disease in certain countries, something which was understood by all present, echoing the value of shared stories.

Global Perspectives managed to catch some of the conversations in this group after dashing across from the other hotel. We heard participants from HAE Finland talk about their situation and knew it would be essential to get their input. Jenni Paasilinna kindly answered our questions. She and colleagues from Finland felt that the small, casual format of a breakout really aided conversation, and that conversation helped them to feel that they were not alone with the problems they faced in finding doctors capable of treating and diagnosing HAE. The breakout session, Jenni felt, also made it easier to ask questions about tools like HAiE FocalPoint and HAEi Connect.

Jenni told us that in Finland, despite every University Hospital in Finland having one doctor who specializes in HAE, the level of knowledge can vary widely, with some knowing very little and being unable to diagnose or treat HAE properly. One doctor is nearing retirement, leaving patients concerned in case his replacement lacks the knowledge and experience he has.

Jenni felt that the whole GLW was: ‘an amazing opportunity to connect with people from other countries with the same experiences as a patient and a caregiver.’

America, Australasia, and South Africa
Fiona Wardman led a large group of English-speaking MOs, from North America, South Africa, Australia, and New Zealand. One of the key topics was how to maximize engagement with the information and resources being developed, especially social media. Fiona told us that despite differences in MO sizes, the spirit of collaboration was strong, and everyone left inspired to drive greater impact.

A big discussion point included making the most of content, such as videos, webinars, and online meetings. One idea was to create something that was ‘evergreen, ‘ meaning the topic would be endlessly relevant, such as ‘What causes HAE?’. Alternatively, creating a long video that could be broken up into bite-sized chunks and shared on social media also meant any investment of time or money would be well made.

With such a large group, we heard from three participants. Janice Strydom (HAE South Africa), Olivia Worthington (HAE Australasia- New Zealand), and Lisa Facciolla (US HAEA.)

Olivia told us that the breakout session was really productive. It was ‘fantastic,’ she said, to get in a room face-to-face with other HAE leaders. She said having an: ‘open discussion about the wins and challenges we face, especially in larger and smaller organizations, meant that learnings were shared. And now we’re all connected, it is easier to reach out for information and support.’

‘The breakout format was a real highlight of the 2024 HAEi Global Leadership Workshop. I took lots of notes and had a lot to take away from the session.’

Janice from South Africa also felt the informal setting made it easier to brainstorm solutions and that her team had gone away with new ideas that they could explore further. It also allowed them to expand their network and share their own experiences.

One of the most significant issues facing patients in New Zealand, according to Olivia, was the lack of modern prophylaxis. The small patient population and complex funding system made access a challenge. However, she was keen to stress that despite this, they felt that there was hope. Part of this, she said, was knowing the latest information about HAE and its treatment. This is the best way of getting the best care, she felt.

For Janice, the situation in South Africa is characterized by low diagnosis rates, although an increase in healthcare professional knowledge and awareness has led to more frequent referrals. Like New Zealand, they have a therapy for acute attacks but lack modern prophylaxis.

Janice wanted people with HAE all over the world not to see their condition as a disability. She told us that: ‘HAE can be challenging, but with the right support, patients can live normal lives.’ She quoted the famous American psychotherapist Dr. Ruth Westheimer, who said: ‘Our way is not soft grass; it’s a mountain path with lots of rocks, but it goes upwards, forward, towards the sun.’

Lisa Facciolla was part of a strong contingent from the US HAEA team, present in the breakout session. She felt strongly that the breakout sessions represented an incredibly productive time where people exchanged ideas freely. Part of the value, she felt, was that by sharing ‘unique victories,’ whether an inspiring event or youth outreach, everyone grew stronger and more effective. Such sessions and the wider GLW were a crucial way to come together with others and share knowledge.

‘When we come together to share, truly great things happen. The breakout session was the perfect example of that.’

Many advocates may look enviably at the medicines available to treat HAE in the US, and Lisa acknowledged that they are fortunate to have 8 approved therapies; the work of the US HAEA is far from over. She felt that they must continue to advocate to safeguard access, so their community can get medication and the reimbursement needed to afford them.

Mediterranean, Central Europe and Middle East
Maria Ferron and Michal Rutkowski worked in tandem, bringing together their groups to provide a dynamic platform for collaboration. Their sessions were structured according to key themes in their regions, with these topics generating a lot of passion and energy. Maria comments that the informal nature meant more networking was possible, leading to greater connections between individual advocates.

What came out strongly from all of the session reports was the sense of togetherness and encouragement. Although every organization reported challenges, no one was alone in their issues, and everyone was ready with an idea or an experience that could help overcome the problem.

Global Perspectives spoke to Peter Strahl from HAE Hungary. As a veteran of HAEi conferences, having attended since 2018, Peter said that the breakout session offers the chance to build their organization’s capabilities and hear about the work of other countries. Peter explained that one of the challenges facing HAE Hungary is trying to get more active participants in the MO. One of the ideas he shared was their plan to organize an HAE ‘club,’ in which they will update attendees on the latest news in HAE globally and in Hungary.

Peter wanted to thank everyone who works hard to support HAE patients with what he called their ‘struggle,’ he said this effort has led to many achievements for people living with the condition.

HAE patients in Morocco face many challenges, and it is a struggle to access necessary medications, according to Meryam Jennane, of HAE Morocco. She said that networking with pharmaceutical company representatives is critical to their success. Sitting down with fellow patient advocates was valuable, she felt, saying: ‘It gave us an opportunity to learn from the experiences of other organizations, which is essential as we continue to raise funds and identify new patients.’

South America and Mexico
Fernanda de Oliviera Martins led the South America and Mexico breakout session, in which she aimed to foster connections, learning, and fun. In a large group of around 70 people full of energy, there was a chance to see old friends and meet new people. There were quizzes to test knowledge, and, as Fernanda explained, the balloons were part of an activity to highlight shared problems and opportunities.

After the session, Global Perspectives caught up with the team at HAE Venezuela. They said that the session was an excellent opportunity to network with the other organizations in Latin America and strengthen the support they receive. Despite having no available medication, HAE Venezuela remains committed to supporting patients and fighting for better, and they felt that the GLW provided a great opportunity to gain up-to-date knowledge and tools.

Sub Sahara Africa
Patricia Karani, the RPA for Sub Sahara Africa, focused her session on how to resolve challenges facing countries in the region. She said the main issues were access to HAE tests and lack of correct information amongst healthcare providers and patients.

One of the participants in this breakout was Andrea Ntanga from HAE Mozambique. She said that connecting with representatives from countries like Kenya and Comoros was ‘a privilege’, as they faced challenges similar to those faced by Mozambique. In addition to the chance to co-create solutions, Andrea felt that cross-cultural dialogue was an essential part of the process.

As a researcher in the biomedical field, Andrea enjoyed the chance to meet and discuss with healthcare professionals and patient advocates. In common with many in the global HAE community, Andrea wanted people with HAE to know they are not alone.

‘Every voice matters, and together we can drive change and improve access to care.’

South Eastern Europe
Global Perspectives learned a bit more about this session from Sofia Papalexiou of HAE Greece. Sofia told us that it helped to understand the common issues everyone faced, as well as just getting to know one another better. In common with many participants, Sofia felt that exchanging news and ideas was a real benefit.

‘It was helpful to meet with friends from all over the world with whom we share the same goal, and take inspiration and strength from each other.’

As HAE Greece is a reasonably new MO, Sofia felt that they are trying to build trust with patients, through projects to improve quality of life. Ultimately, their goal is to get more people involved with their MO.

Information and misinformation: A breakout session discussion

A topic for discussion in the breakout sessions was how to engage patients in a safe, professional way. For some, that meant having both public and private Facebook communities, allowing a private space for community members to share experiences. Moderation challenges were discussed, as well as respecting peoples’ opinions while ensuring access to good quality evidence-based information.

All of these conversations led Global Perspectives to ask: What are the most common and most worrying pieces of misinformation people in the community have heard about HAE?

Before we begin, individual responses and experiences of people with HAE are always respected, and if sharing seems to help someone else, that’s fantastic. Global Perspectives always recommends checking any questions about any aspect of HAE with your HAE doctor/ healthcare professional.

For many, foods seemed to cause a lot of misunderstandings. One suggestion was that eating chicken caused swells, whilst another participant shared that well-meaning relatives suggested that eating pork led to attacks. One participant mentioned a patient who noticed a difference after reducing sugar intake. The reason for this, others felt, could be as simple as losing weight, which can lower stress on the body leading to fewer attacks. Drinking more alkaline water was suggested to one participant by a friend. Individual responses and experiences of people with HAE are always respected, and if sharing seems to help someone else, that’s fantastic.

The group agreed the desire to find a ‘reason’ may be driving misinformation. One participant told the story of their diagnosis; her family desperately logged all foods in an attempt to isolate a trigger when it turned out that stress led to the attacks.

Other misinformation related to treatment. One person had been asked if HAE medicines are addictive. This is categorically not the case. When people are prescribed strong pain medication such as opioids during attacks, these types of medication can lead to addiction. Specific HAE medicines do not work in a way that can make people addicted.

The success of prophylactic medicine meant that some patients had asked whether they might go into ‘remission’ after not having attacks for some time and perhaps they could stop their preventative treatment. It was important, a breakout participant said, to talk only about ‘attack-free.’ Right now, there is no cure for HAE. If someone is on prophylactic medication, controlled and not experiencing attacks, the medication is doing that.

Overall, the group felt that misinformation could result from people who may be having a lot of attacks, clinging to anything as a source of hope. It can also be difficult, people felt, to counter such misinformation as there is nothing to disprove the assumption, which may make healthcare professionals reluctant to engage. All felt that this was an ongoing conversation and opportunity to share learnings.

Perhaps you and your colleagues have experience of misinformation in HAE? How do you deal with it, and what tips do you want to share? You can contact Global Perspectives via news@haei.org to share your experiences and we’ll keep an eye on the conversation.

A few tips on misinformation

• Consider asking that no medical advice is shared on social media platforms to limit potential misinformation.
• Consider if misinformation should be deleted or responded to with facts and evidence; perhaps inaccurate or misleading information can be addressed by a medical professional.
• Moderation can be powerful, but takes time. A strong social media community will often self-moderate by challenging outlandish or inaccurate ideas.