Member Organization Collaboration Forum
On the first afternoon of the 2026 Global Angioedema Leadership Conference, the audience joined breakout sessions led by their RPAs. These sessions were planned to be more tailored to countries’ individual needs and issues and took the form of smaller, focused workshops, brainstorms, and discussions.
Global Perspectives dropped in on all these forums to get a flavor of the discussions and hear what really mattered to people. What was clear from all sessions was the appetite to learn more about HAEi’s tools and resources. In every group, live sessions helped Member Organization (MO) leads to get to grips with everything from adding patient data to HAEi Connect to encouraging people to use HAE TrackR.
Photo gallery: Enjoy a selection of snapshots from the breakout sessions – visit the password-protected photo gallery.
Password: galc2026.
Fiona Wardman, Advocacy Lead for Oceania and South Africa, and Patricia Karani, HAEi RPA for Sub Sahara Africa, led a large group. In addition to their region’s countries, they also welcomed representatives from Canada and the United States.
This diverse group was divided into smaller groups for a series of focused brainstorms, emphasizing the importance of mixing established advocates (particularly from the US and Canada) with newer or emerging organizations from Africa and other regions. Participants were intentionally split into mixed groups to facilitate the exchange of ideas between different levels of organizational maturity. Some of the key topics for discussion in this group were:
The Achieve by 2030 check-in
MOs reviewed their long-term goals established during a previous hae day :-) initiative. Countries like Australia and New Zealand reported being on track to secure funded prophylaxis and increased treatment options by 2030.
Patricia from Kenya shared a significant lesson. After hitting a “deadlock” with the Ministry of Health in pursuit of her 2030 goal, she refocused on training government doctors and integrating HAE into university medical curricula to build awareness from the ground up.
Patient empowerment
A major theme was providing patients with the tools to speak for themselves. One group highlighted a successful letter-writing campaign that enabled members to contact their provincial ministers of health directly, shifting accountability to local elected officials.
How not to fail at advocacy
This group took advantage of the concept of reverse brainstorming, asking, ‘What ways can an advocacy group fail?’ By doing this, the group listed all the possible pitfalls an organization might encounter and considered how to avoid them. Common failures included:
- Lack of transparency
- Not listening to the patient’s needs
- Inadequate financial planning
- Complacency once initial goals (like medication access) are achieved
The groups then flipped their ‘failure lists’ to identify strong leadership traits, such as:
- Adaptability: Being willing to change rigid visions
- Mission Focus: Staying centered on the core purpose
- Brand Neutrality: Maintaining independence from pharmaceutical companies to ensure broader support
- Authenticity: Recognizing the diverse “walks of life” within the advocate community
Overcoming complacency
A recurring topic for well-established organizations (especially in North America) was how to prevent complacency in the next generation. Advocates discussed how active mentorship and ‘succession planning’ could help address the issue.
Mentorship and networking
The HAEi global network is a valuable primary resource. New organizations were advised not to reinvent the wheel but to utilize established HAEi tools (websites, the HAEi Connect database, and RPAs) to build their local capacity.
Jørn Schultz-Boysen and Maria Ferron led the Western Europe breakout. The discussions ranged widely. There were live demonstrations of HAEi Connect, a deep dive into EventZoo Light and HAEi FocalPoint, and their power to support MOs in creating events and reaching their members. As with many of the sessions, there was a review of the Achieve by 2030 goals, which led to discussions about the changing situation across different countries.
Shared decision making
One area of particular discussion was shared decision making between physicians and patients with HAE, and how patients can proactively prepare for a consultation. Many participants felt that, while shared decision making is desirable, the lack of time during consultations is a barrier. For this reason, the group decided that sharing information in advance would make a short consultation more action-oriented. A tool such as HAE TrackR can provide reliable data on attacks and treatment and ensure physicians have the information they need to work effectively. A participant from HAE Belgium described the process in their country, in which patients are first seen by a healthcare assistant who can gather detailed information. The patient’s information can be reviewed while a more senior clinician is present with the patient, allowing for joint final treatment decisions. Finally, the group agreed that patients should feel empowered to take ownership of the consultation, bringing in outside information or their own data (such as attack diaries) to spark conversation.
HAEi RPA Natasa Angjeleska led the discussions in this breakout. The agenda focused on the requests and feedback of the participating MOs. Some of the key topics here were:
Access to diagnosis and treatment
Natasa told the group that these challenges are universal but vary in intensity by region. The group discussed that while some countries have advanced therapies, many others are in desperate need of even basic additional medications. The group discussed a strategic roadmap. Countries must first secure acute (on-demand) treatment to save lives, with the secondary goal being preventive treatment to improve long-term quality of life.
Unique issues in countries in the region
A specific discussion of the situation in Albania revealed that while C4 and C1 inhibitor testing may be available, they are not covered by health insurance, making them inaccessible for many. Genetic testing is also not covered. In Bosnia and Herzegovina, everything is reportedly available, but diagnostic materials (blood/tissue) must be sent abroad to Slovenia for processing because local labs lack the necessary facilities. In Bulgaria, diagnostic tools such as C1 inhibitor antigen and function tests are physically available but lack insurance coverage, creating a financial barrier to diagnosis.
HAEi RPA Michal Rutkowski joined with Mohamed Osman, HAEi’s Advocacy Facilitator in the Middle East and North Africa, to welcome MO leads from across the regions.
Regional under-diagnosis
A major focus was the significant gap between estimated and confirmed HAE cases. Data revealed that in the CEE region, only 22.5% of potential patients are diagnosed, while in the MENA region, the figure is 8%. Leaders emphasized that thousands remain unaware of their condition. Diagnosis was seen as critical to advocacy, as a single motivated individual—often a patient or caregiver—is typically the catalyst for starting a national patient organization and driving legislative change.
Patient self-administration
A recurring goal for 2030 is achieving high rates of self-administration. MO leaders shared progress in training patients to transition from hospital-based treatment to home-based care (intravenous or subcutaneous), which significantly improves quality of life and independence.
Physician education and knowledge gaps
Survey results showed that while HAE specialists have “good to very good” knowledge, emergency room doctors and general practitioners often have “poor” knowledge. This frequently leads to patients being misdiagnosed with common allergies or receiving incorrect emergency treatment.
Data-driven advocacy
The group emphasized the importance of collecting Real-World Evidence. By using tools like the HAE TrackR app, organizations can present hard data on the “burden of disease” to government payers to justify the high cost of reimbursing modern medications.
Awareness campaign planning
The session also included a workshop where teams designed a 90-day awareness plan. MO leaders identified the target audiences (e.g., paramedics and medical students) and communication channels (e.g., social media videos and TikTok) they would use to create a campaign to reduce the stigma and increase the diagnosis rates in their respective countries.
HAEi RPAs Fanny Schappler and Yong Hao Lim led this breakout. MOs completed a 12-month work plan to set measurable, achievable objectives and an action plan to achieve their goals for their organizations.
Discussions centered on the varying medication access situations across the region and the activities implemented to address them. These include a children’s storybook developed in Hong Kong and now available in Chinese and English. Some of the other topics covered by the group include:
The HAE diagnosis gap
The session highlighted a diagnosis gap. The APAC region is the most populous in the world, yet data suggests only 2.5% of potential HAE patients in the region are actually diagnosed. This underscores a massive need for increased screening and awareness.
Recent legislative and access successes
Several countries shared significant breakthroughs:
- India: Successfully obtained government-funded access to C1 inhibitor
- Korea: Reached a “breakthrough” where the national health insurance now covers 90% of the cost for lanadelumab
- Thailand: Reported that approximately 80% of patients are expected to receive life-saving medications for free starting next year
Youth engagement and succession planning
Leaders noted the difficulty of involving younger generations in advocacy. To ensure the long-term survival of patient organizations, they discussed the need for succession planning and programs like HAEi LEAP to mentor the next generation of patient leaders.
Active for HAE
To celebrate hae day :-), the group proposed a regional initiative to get patients and doctors moving. The goal is for APAC countries to collectively break last year’s record of logged physical activities (walking, yoga, gardening) in the HAEi #active4HAE challenge. One idea was for countries to live-stream their activities in real time to show a united front for HAE awareness across the Asia Pacific region.
HAEi RPAs Fernanda de Oliveira Martins and Javier Santana led discussions in this group.
The session was highly interactive, dynamic, and collaborative. The main objective was to strengthen connections among MO leaders in Central and Latin America, and to encourage participants to exchange experiences and feel part of a strong regional and global community.
Fernanda told us that: “It was important to build more connections and reinforce trust between MO leaders in the region. This gave people a greater sense of belonging to a collective effort, where individual actions contribute to a larger impact.”
In addition to working together as a whole group, there were smaller sessions where MO leaders from the South America and Mexico region and the Central America and Caribbean region could discuss their specific issues and challenges.
Some of the key topics discussed were:
Working together
The MO leaders across the region discussed opportunities for greater collaboration and for working together across countries.
To bring people together, the session included an interactive game of ‘human bingo’ which helped participants get to know each other in an informal, inclusive way. The group then participated in a collaborative problem-solving exercise, working together to answer questions and reveal a shared message for the conference.
Using HAEi resources
How to get the most out of HAEi tools and resources was a big part of the discussions, especially HAEi Connect and HAEi Focal Point, to strengthen advocacy, communication, and data management.