From Zoe Steiner, Operations Coordinator, HAE Australasia

Over the past few months, the HAE Australasia team has been focused on strengthening connection, education, and support for the HAE community across Australia and New Zealand. A recent highlight was our Patient & Carer Meeting in Auckland, which brought together individuals from across New Zealand. We were pleased to welcome HAE specialists from both Australia and New Zealand, who shared valuable insights on current treatments, clinical trials, and assistive technologies—including apps designed to help manage life with HAE more easily. The event also created a meaningful space for local patients and carers to connect, share their experiences, and build ongoing support networks.

We’re also pleased to have recently welcomed more than 10 new members to our growing community. We’re proud of the work we’re doing to ensure that people living with HAE are seen, heard, and supported.

As we continue to support members across a wide geographical region—including time zones spanning up to five hours—we’re looking at ways to stay connected more regularly. In the coming months, we plan to hold a series of casual online catch-ups to provide a relaxed space for community connection, updates, and peer support. These informal sessions will help us stay in touch between larger events and ensure everyone has an opportunity to participate, no matter where they’re located.

We’re also actively exploring funding opportunities to support more face-to-face gatherings in the future. These in-person events are incredibly valuable for strengthening our community, sharing lived experiences, and accessing expert advice—and we’re committed to making them as accessible as possible.

Thank you to everyone who has joined us so far. We look forward to staying connected and continuing to grow our HAE Australasia community.

From Lisa Buchberger, HAE Austria

HAE Austria Elects New Board
On Saturday, April 26, 2025, HAE Austria’s annual patient meeting took place in Vienna at the Hotel Superbude. After a welcoming coffee, the general assembly began for all members present. After the quorum was established and the reports from the chair and auditor were presented, the board was discharged, and the election proposals were presented. Lisa Buchberger was unanimously elected as the new secretary of HAE Austria. She succeeds Christian Müllner, a board member since the patient organization’s founding in 2006. He was appointed HAE Austria’s first honorary member during the motions to the general assembly. A heartfelt thank you for your years of dedication!

After the general assembly, the agenda included exciting presentations by Prof T. Kinaciyan, Dr Clemens Schöffl, and Sabine Altrichter (doctor of public health). A shared lunch on the 7th floor of the hotel, with outstanding views over Vienna (and especially the Vienna Prater), was enjoyed before the afternoon program offered a free choice of two workshops.

Country updates shared by Javier Sanatana, HAEi’s Regional Patient Advocate, Central America and Caribbean

Dominican Republic: The group is working to ensure that medications are included in the health system and continues their efforts and meetings with medical professionals to promote HAE. New HAE patients and doctors have been identified.

Puerto Rico: There have been public discussions about the recently passed Law 9 of 2025, which establishes a new support office for people with rare diseases. Encouraged by follow-up from RPA Javier Santana, the Puerto Rico Department of Health actively participated in the hae day :-)awareness campaign. The group held informational events, continued dialogue with pharmaceutical companies, and participated in local events to further educate about new HAE treatments. The local group also represented Puerto Rico at the 2025 US HAEA National Summit in Baltimore in July.

Guatemala: More allergist physicians have expressed interest in receiving training on HAE. Dr Emilia Morales, a HAE patient and healthcare professional, has actively collaborated with health centers to raise awareness about Hereditary Angioedema.

Cuba: Unfortunately, a shortage of specific medications for HAE has emerged again. New physicians have been identified who are providing the necessary care to HAE patients in this country.

From Mdm Zhang Nan, HAE China, and Lim Yong Hao, RPA HAEi

This year’s HAE National Annual Meeting unfolded over two days, from June 27 to 28, at the Tiantan Hotel in the heart of Beijing. Held under the banner “United in Strength, Hope for the Future,” the event brought together nearly 180 patients and family members from across the country, along with leading medical experts and patient organization leaders. Jointly organized by the Chinese Organization for Rare Disorders (CORD) and HAE China (also known as the Yu Yan Angioedema Care Center), the meeting showcased the tremendous strides China has made in the diagnosis, treatment, and community support for patients and caregivers living with HAE.

This year marked a significant milestone in China’s nine-year journey of officially organizing HAE activities. Reflecting on the humble beginnings, Mdm Zhang Nan, National Contact for HAE China, shared how the initiative began in 2016 with a modest gathering of just 20 patients at Peking Union Medical College Hospital (PUMCH). Today, the annual meeting has grown into a large-scale national event. HAE China’s membership has expanded from 130 to nearly 400, while the number of hospitals capable of diagnosing HAE has increased from just one to more than 100 across the country.

According to Mr Kevin Huang, founder of CORD, the number of diagnosed HAE patients in China has now surpassed 1,000. He expressed a hopeful vision for the future where patient gatherings are not prompted by illness, but by shared journeys and life experiences. What was once a condition without treatment options has seen a major breakthrough: first-line HAE medications are now included in public health insurance. These achievements reflect a remarkable collaboration between medical professionals, pharmaceutical companies, patients, and caregivers.

During the meeting, medical experts from PUMCH, led by Professor Zhi Yuxiang, provided timely updates on the evolving landscape of HAE care in China. Topics included the early detection of laryngeal edema, the importance of genetic counseling in family planning, and the ongoing challenge of misdiagnosis. Professor Zhi also mapped out the treatment timeline and discussed the availability and reimbursement of both on-demand and preventive therapies. Domestic pharmaceutical innovation is also gaining momentum, with several Chinese-developed therapies currently in clinical trials.

The conference also served as a valuable platform for dialogue between doctors and patients. In the Q&A session, medical experts addressed practical concerns such as medication intervals and daily precautions. Patient testimonies, ranging from individuals who endured years of misdiagnosis to advocates who successfully lobbied for local policy changes, offered moving accounts of resilience and determination.

In a roundtable discussion, Mr Lim Yong Hao, HAEi’s Regional Patient Advocate for East Asia, commended China’s growing leadership in the region. He called for the further development of a tiered diagnostic system to reduce regional disparities and emphasized the importance of increasing the number of HAE-trained healthcare professionals to improve care delivery and disease management. Pharmaceutical partners echoed their commitment to strengthening treatment infrastructure and raising public awareness.

As the event came to a close, Mdm Zhang Nan acknowledged the challenges that remain, namely, limited awareness of HAE and unequal access to treatments. Still, her message was one of perseverance and solidarity: “Rare does not mean forgotten.” The meeting concluded with a group photo and a shared pledge among participants to meet again in 2026.

Special thanks were extended to Takeda China, Qualifind Medical, CNBG, and Argo Biopharma for their generous support. Through continued collaboration, the vision of a better future for HAE patients in China is steadily becoming a reality.

From Jesús González, Costa Rica

First Step Toward a National HAE Patient Organization
Over the years in Costa Rica, we’ve faced many challenges in creating an organization that represents and defends the rights of people living with HAE. Although rare, this condition requires specialized care and much more visibility within the healthcare system.

After many efforts, conversations, and collaborative work between patients and HAEi’s Regional Patient Advocate in our region, Javier Santana, we are proud to announce that we’ve finally taken the first step toward the formal creation of a patient organization. While it’s just the beginning, it’s a meaningful milestone that allows us to start building a strong foundation for better representation and advocacy.

This isn’t just a symbolic achievement — it’s a strategic one. It gives us a stronger voice to be heard by health authorities, especially the Costa Rican Social Security Fund (CCSS). Our main goal is to work with institutions to improve the quality of life for people with HAE in Costa Rica, ensuring access to proper treatments, timely diagnoses, and comprehensive support.

We invite anyone who wants to collaborate or share ideas to do so freely. Every contribution matters and will be welcomed — this project is built by all of us, with the well-being of patients as our shared goal.

From Rosa María Pérez González, HAE Cuba

A Community in Progress Amidst Deep Challenges
Greetings from Cuba. We send our warm regards from our patient group, which is slowly building a national community. Today, we join you — patients, families, doctors, and advocates around the world — in solidarity and hope. We are united by our shared experience with HAE.

We face tough challenges, including limited access to both diagnostics and modern treatments. But we find strength in mutual support and in the backing of HAEi, which welcomed us as a member country in 2024. From different provinces and through our virtual groups, we share stories, push for visibility, and work toward a better life.

This year, we made a major step for our patients: a new pediatric care clinic for suspected HAE cases was launched at the Institute of Hematology and Immunology. This specialized service for children marks a big win for early diagnosis and national HAE care. Now, young patients and their families have a space dedicated to their care and monitoring, with professional support from early childhood.

However, amid Cuba’s severe economic and social crisis, we’ve made no progress in expanding diagnostic tools for HAE. We also don’t have access to specific treatments like purified C1-INH or icatibant, which are used in other nearby countries. At the moment, we only have extremely limited access to danazol, tranexamic acid, and fresh frozen plasma — and even these are not consistently available for all who need them.

Despite these shortages, we continue working together to secure dignified care and the support all patients deserve.

From Camelia C. Isaic, Czech HAE Junior z.s.

HAE Junior presented a scientific poster and a new art exhibition in Budapest
HAE Junior from the Czech Republic participated as a partner organization at the prestigious scientific 14th C1-inhibitor Deficiency & Angioedema Workshop in Budapest, Hungary (29 May – 1 June 2025). This year, our patient organization presented artworks by HAE juniors & friends as well as a poster in the scientific section of the program.

The poster titled ‘Unmet Needs and Systemic Challenges of HAE Pediatric Patient Families in Europe’ shared the findings of a large-scale AI analysis of data reflecting the experience of patients from 11 European countries. This research project was made possible with the support of AMGEN #RAREis Global Advocacy Grant Program.

Read more about the study, its methods, and key findings on our website.

In addition, the new exhibition ‘My Inspiration’ prepared by HAE Junior patient organization, showcased drawings and paintings by children and adolescents with HAE, their siblings & friends. Symbolically, on International Children’s Day, their artworks displayed the everyday challenges, dreams, and sources of inspiration that help them overcome obstacles in life. The scientific conference participants hence had the opportunity to look into the world of HAE juniors through their creativity.

Learn more about the exhibition and view selected artworks on the HAE Junior website.

Many tHAEnks to all contributing talented young artists from the HAE patient community!

From Caroll and Andry Batista, HAE Dominican Republic

FUNDAEHER Is Born and Legislation for Rare Diseases Advances
This year, 2025, has been a significant one in the fight for the rights and care of people living with HAE in the Dominican Republic.

For the first time, after some meetings with HAEi’s Regional Patient Advocate, Javier Santana, and his advice, the founding members of FUNDAEHER (Dominican Foundation for Hereditary Angioedema) met in person with several patients we’ve been in touch with for some time. This gathering marked a hopeful milestone in building a more united, informed, and empowered community.

One of the biggest breakthroughs this year was the addition of an allergist with HAE experience to our mission as a medical collaborator. This step brings us closer to providing more specialized and compassionate care tailored to the real needs of HAE patients.

At the same time, we’ve been actively following a bill introduced in the National Congress that aims to create a legal framework for the comprehensive care of people with rare diseases — including HAE, which remains underrepresented. This legislative proposal offers real hope for better access to specialized services, early diagnoses, and timely treatments for a historically invisible population.

Finally, we expect that before the end of the year, FUNDAEHER will gain official legal status as a foundation, establishing a formal structure to support those who need it most.

From Edison Galarraga, HAE Ecuador

Evaluation of the prevalence of sleep disorders in severe and uncontrolled patients with HAE in Ecuador
With great satisfaction, the Espiritu Santo University, located in the city of Guayaquil, through the Research Unit directed by Dr Iván Chérrez, celebrates the completion of research on sleep apnea in patients with hereditary angioedema in Ecuador. This achievement represents an important contribution to national scientific knowledge and reaffirms our commitment to the health and well-being of the community. 

From Raquel Fuentes, HAE El Salvador

HAE Awareness Walk Unites Our Community
In recognition of hae day :-), we organized a symbolic walk in El Salvador. Patients, caregivers, and family members joined together, creating a space for connection and visibility.

Throughout the day, we shared personal stories and reinforced the need to build support networks and raise awareness about this still-unknown condition.

Every step we take together strengthens the HAE community in El Salvador and makes the invisible visible.

From Samantha Alvarado, HAE Guatemala

Limited Diagnosis and Structural Barriers
Unfortunately, living with HAE in Guatemala means dealing with a healthcare system that still doesn’t fully recognize or understand the condition. Even with doctors willing to help, such as Dr Rigalt, the lack of awareness and resources causes diagnoses to be delayed — or never happen at all.

Awareness, diagnosis, and treatment access in Guatemala continue to progress very slowly due to a severe lack of nationwide information. While some information is available online, both patients and doctors remain reluctant.

We’ve tried to support family members and other possible patients, but most labs do not have the capacity to run C1-INH or genetic tests. At this point, only two families, in addition to mine, have been diagnosed with HAE.

Dr Emilia Morales — who is also a patient — continues her efforts to raise awareness about HAE within the country’s healthcare centers.

As for treatment, we still don’t have access to specific medications. We rely on limited options such as danazol or tranexamic acid, and unfortunately, the use of steroids — which are known to be inadequate — remains common.

HAE continues to be underdiagnosed in Guatemala. We hope efforts toward education and awareness will keep moving forward.

From Priyanka Meduthuri, HAE India

HAEIPΑ Patients Meet 2025 in Charnock Hospital, Kolkata: Two days and so many powerful moments.

On May 17, HAE India’s dedicated state representatives came together at Charnock Hospital, Kolkata, to strengthen our collective mission and drive change for our rare community.

We discussed how to become stronger, more effective advocates, how to influence policies, and how to reach more doctors and undiagnosed patients across the country. We explored how to leverage powerful tools like HAEi Connect, HAE TrackR, and the HAEi Advocacy Academy to equip ourselves to better support patients and families. A key part of our discussion focused on India’s Rare Disease Policy – its current challenges, opportunities for improvement, and how we can ensure better access to life-saving treatments.

Most importantly, we outlined clear goals for our states and created a collaborative to-do list for the future of HAE advocacy in India. Because every patient matters, and every voice counts!

On May 18, 2025, we came together at Charnock Hospital, Kolkata, for the HAE Society of India (HAESI) Patients Meet – a full day of learning, sharing, and uniting as a rare disease community.

We began with a heartfelt welcome note from President Pravalika Meduthuri and Founder Dr Shaibal Guha, sharing how far we’ve come on India’s HAE journey. Fanny Schappler, our HAEi Regional Patient Advocate, reminded us that we are part of a global family fighting for access, awareness, and care.

One of the most powerful moments of the day was a one-hour talk by Dr Ankur Jindal, who gave a deep and incredibly helpful overview of HAE in India – from diagnosis to treatment gaps to emergency care. His insights were eye-opening and empowering for patients and caregivers alike. We also had an expert talk by Dr Binay Biswas, who brought clinical clarity and practical information that helped patients better understand their condition.

The expert panel, featuring Dr Binay Biswas, Dr Suprit, Dr Archan, and Dr Rakesh (all from HAESI), and all the wonderful doctors from Charnock Hospital, offered practical advice and answered patient questions with compassion and clarity.

After a powerful morning of knowledge-sharing, the afternoon brought heart, connection, and action. Patients and families shared their journeys – raw, real, and deeply moving. We admire their courage to open up, and we’re so grateful they traveled from near and far to attend this meet and be part of something bigger.

One of the most meaningful parts of the day was seeing the engaging conversations between patients and doctors filled with questions, insights, and genuine connection. Mr. Manoj Kumar guided us through India’s Rare Disease Policy, helping us understand the road ahead and how we can influence change through advocacy.

We closed with an interactive quiz, shared laughs, and reflections that reminded us – this isn’t just an event. This is the beginning of a stronger, more united HAE community.

News from Parichehr Bahraini, HAE Iran

Hereditary Angioedema (HAE) International Day at the Immunology, Asthma, and Allergy Research Institute (IAARI), Tehran University of Medical Sciences, Iran
In honor of hae day :-), the Immunology, Asthma, and Allergy Research Institute (IAARI), in collaboration with the Immunodeficiency Patients Advocacy Association (IDPA), hosted a gathering for HAE patients and their families. The event took place on Wednesday, May 14th, 2025, from 10:00 AM to 12:00 PM at the Farhoodi Conference Hall in the Children’s Medical Center in Tehran. The meeting was accessible both in person and virtually.

The meeting focused on the latest developments in the diagnosis, prevention, and management of HAE, aiming to raise awareness among patients and their families across the country.

Initially, Ms. Marzieh Salk, CEO of IDPA, mentioned that May 16th is recognized globally as hae day :-). She highlighted various awareness programs held worldwide to educate people and attract attention from society and authorities to this disease. In Iran, similar initiatives have been ongoing for five years – initially exclusive to healthcare professionals, and more recently, from 3 years ago, including programs directly for patients and their families.

She also shared updates on the institute’s activities, such as disseminating educational content via social media and supporting patient participation in international conferences, and announced details of the upcoming conferences.

Following her, Dr Mohammad Reza Fazlollahi, an allergist and clinical immunologist at IAARI, gave a lecture on the diagnosis and treatment of HAE. He emphasized the importance of awareness for managing the disease effectively and living actively with HAE. Dr Zahra Alizadeh, PhD in biomedicine, discussed the genetic factors involved in HAE. Dr Parichehr Bahraini, a pharmacist, talked about medications used in HAE and the importance of proper medication use.

At the conclusion, a patient shared his personal experience of adapting to this chronic condition and leading a vibrant, successful life while managing the illness. The speakers then responded to questions from the attendees.

For more information, you can visit the news article in Farsi on the IAARI website.

From Bettina Carty, HAE Ireland

Now that we are halfway through 2025, it has been great so far for HAE Ireland.

In March, we had our first patient meet-up, which was a great success, with patients coming from all over Ireland for the afternoon in Dublin.

In May, we had hae day :-) – this started on the 16th with Swords Castle being lit up in purple to celebrate, then on the 17th, we had a walk in Phoenix Park in Dublin City. It has been wonderful to meet so many new patients and carers in the last months.

We are looking forward to the next 6 months and the 2025 HAEi Regional Conference EMEA in October, where a number of new patients from Ireland will be in attendance.

From HAE Mozambique

In recognition of hae day :-), HAE Mozambique was invited to speak on a national TV platform on May 22, 2025. During a 30-minute live segment on STV’s morning show Manhãs Alegres – one of the most-watched programs in Mozambique – we discussed the basics of HAE, its symptoms, and what it’s like living with a rare disease in the country.

Our patient lead, Daniella Assa, shared her personal journey with HAE, alongside the work that HAE Mozambique has been doing to raise awareness, identify patients, and promote access to treatment. We also invited the public to reach out to the organization if they suspect they may have HAE or would like to get involved with our cause.

During the interview, Daniella also made a public appeal to the Ministry of Health to support ongoing efforts aimed at improving access to healthcare for patients with rare diseases in Mozambique.

The program is available to watch here, in Portuguese.

Following this appearance, we received three calls from individuals suspecting they may have HAE. These cases were referred to our doctors for further evaluation. Additionally, two people reached out with interest in volunteering for the cause – a very encouraging outcome.

Due to the positive public response, Daniella was invited for a longer, more in-depth interview on STV’s Vidas em Directo, a show that highlights real-life stories from across the country. This interview was recorded on June 7 and aired on June 11. It generated substantial public interest in HAE and the work being done by our member organization.

In the one-hour segment, Daniella discussed her diagnostic journey, the challenges of living with a rare disease, and the emotional impact of her experience. She closed the interview with a heartfelt message of solidarity, emphasizing that people with HAE are not alone – and highlighting the community support made possible through HAEi’s efforts globally.

As a result, we received more than 10 calls. Working in collaboration with our local doctors, we have since begun testing and clinical investigations for at least three suspected patients.

Daniella shared that her LEAP educational experience has significantly improved her understanding of media engagement and the power of building strong relationships with journalists for advocacy purposes. While awareness of HAE in Mozambique remains limited, the interest sparked by these interviews has been incredibly motivating for our team.

From HAE Nepal

We have a few updates:

1. All the resources are translated into the local language.
2. HAE Nepal took part in a Patient Advocacy Program and competed amongst 20 plus countries, secured a top 3 position, won a 1000 euro grant, and received it successfully in the bank.
3. A new website for HAE Nepal has been launched at haenepal.com
4. A video awareness project with Dr Dharma is in line.
5. An MOU signing with the Rare Disease Society of Nepal, RDSN, which is a member of Rare Disease International, has been signed by HAE Nepal and awaits signing from RDSN, where we will be collaborating in future events.

From HAE Panama

During the month of May, the Panamanian Association of Hereditary Angioedema Patients carried out various awareness and visibility activities.

• We began by creating an Instagram campaign and sharing important information and graphics about HAE on Instagram.
• On May 7, the association’s board of directors and other patients met with representatives from the pharmaceutical company that represents the generic drug icatibant in Panama. They learned about the general information about this medication.
• On Saturday, May 10, the group of patients met at the Panama Canal administration building to have the building illuminated in the colors of HAE Month. There, they distributed flyers to passersby with information about hereditary angioedema, attacks, symptoms, and where to seek help.
• On May 16, they had a meeting with the head of the emergency department at the Children’s Hospital. They were accompanied by the state coordinator of rare diseases, Dr Johnny Cuevas. The purpose of the meeting was to verify the availability of medications for pediatric patients and to coordinate training for medical staff on the use of HAE medications.
• Finally, they concluded this month’s awareness-raising event on May 16 with a training session for medical and nursing students at the International University of Panama. This session focused on the general aspects of HAE, led by Dr Olga Melcina Barrera. Dr Johnny Cuevas, the state coordinator of rare diseases, addressed the topic of rare diseases and explained the program run by the Ministry of Health. He also explained how HAE is being managed in the country. The topic of HAE was also addressed from a psychological perspective. This topic was addressed by the psychologist from the Ministry of Health’s rare disease program. This session featured testimony from two HAE patients, Aleyda Milord and Michelle Coronado. Other patients who are members of the association also attended. It’s worth noting that the students were very interested, asked questions, and the auditorium was at capacity. In addition, various buildings at institutions across the country were illuminated during hae day :-).

From Janice Strydom, South Africa

This year for hae day :-) on May 16, 2025, HAE South Africa launched the first in a new series of illustrated children’s books titled “Siya’s Special Superpower”.

The story follows a young boy with a love for soccer, who learns to navigate life with HAE with resilience and pride. With our series of books, we hope to empower children and their families to embrace their uniqueness while raising awareness of HAE among our community.

The book has been positively received by families and healthcare professionals, and we are planning to translate it into additional South African languages to expand accessibility and inclusion. Siya’s story is available on our website.

Our targeted social media campaign leading up to hae day :-) expanded our digital reach, resulting in a 28% increase in engagement. Overall, our advocacy efforts in the past six months of this year have seen strengthened collaborations with other rare disease advocacy groups and academic institutions.

A number of new drug trials are now enrolling patients in S.A., offering not only hope for better symptom control and quality of life but also reflecting South Africa’s growing role in the global HAE research community.

From Soojin Min, HAE Korea

I am writing this to celebrate the hae day :-) event, which has achieved amazing results in Korea.

We are pleased to inform you that hae day :-) steps with more than 130 people have reached 544,890. Our patient association gathered to participate in this event and promote HAE, which was supported by the people.

The 2025 hae day :-) event was held on Saturday, May 10, 2025, in the conference room near Deoksugung Stonewall-gil in Seoul, Korea, to greet each other and walk along the Deoksugung Stonewall-gil to announce hae day :-).

And I shared the information by uploading the hae day :-) event on the social media platform.

Congratulations once again on the successful event, and we will try to make more participants active in 2026.

Thank you for the participation of HAEi and many other countries around the world, and HAE Korea will also work harder to promote HAE.

From Sarah Smith, President, HAE Spain (AEDAF)

April and May were very busy months for AEDAF, with preparations for multiple events to commemorate hae day :-).

Benefit Concert
Our most important event was a Benefit Concert that took place on 25 May in the Teatro Monumental of Madrid, performed by the Madrid Marine Infantry Symphonic Band. It was a magnificent concert, and we thank CSL Behring, Biocryst Pharmaceuticals, and Otsuka Pharmaceutical for their sponsorship, the AEDAF Executive Committee for all their help in the organization, particularly our Vice President, Juan Carlos Valera, who was the driving force behind the Concert, and everyone who participated in and attended the event. Very special thanks go to the Band for selflessly donating their time and superb musical skills to raise awareness and give visibility to HAE, and to their conductor, Lieutenant Colonel Miguel Angel Mateo Gijon, who took a special interest in our cause and carefully selected the musical numbers to reflect the patient journey.

The video of the Concert can be found on our YouTube channel.

“Historias Que Cuentan”
AEDAF collaborated with the CSL Behring-sponsored project, “Historias que Cuentan” (Stories That Matter), which was launched on hae day :-). The project consisted of an online patient survey (116 respondents), followed by in-depth interviews with 12 patients and caregivers.

This initiative was born from the need to give voice to these stories. Through the various narratives, patients and family members share their experiences with the onset of their first symptoms, the path to diagnosis, and how they have learned to live with the disease. These testimonies are also complemented by the survey results, demonstrating that some of the situations talked about in the individual stories are shared by the patient community.

To facilitate access to all this information, AEDAF has developed “Hereditary Angioedema. Stories That Matter,” a dedicated website, and has published an informational brochure and a booklet that contains the patients’ personal testimonies.

This campaign highlights the importance of increasing awareness and education about HAE.

#somosAEHinchas
Biocryst Pharmaceutical sponsored an incredibly successful social media campaign to educate and raise awareness about HAE: #somosAEHinchas. Hincha in Spanish means an enthusiastic supporter or fan of a soccer (football) team, but “hincha” also comes from the verb “hinchar”, meaning to swell. The campaign was launched on 10 May in the fan zone of the Metropolitano stadium in Madrid, prior to the Atletico de Madrid-Real Sociedad soccer game. With the support of the Atlético de Madrid Foundation, and on the occasion of Children’s Weekend, fans were asked to score a goal against HAE at the “somosAEHinchas” booth, where inflatables helped to show them the symptoms of this rare disease that causes swelling in numerous parts of the body. Two well-known influencers were there to encourage and animate the visitors to take part in the fun. This was then followed by a social media campaign that succeeded in reaching out to a larger-than-expected audience, with many views, shares, and likes.

Vigo (Galicia)
A General Clinical Session was held in the Hospital Alvaro Cunquiero of Vigo (Galicia) on 16 May, where Dr Alberto Rivera, Coordinator of the Multidisciplinary Functional Unit on Rare Diseases in Galicia, explained the Galician Rare Disease Strategy and Dr Carmen Marcos, head of the hospital’s Allergy Department, gave a talk on HAE. This was followed by the inauguration of the itinerant interactive exhibition “Poniendo cara al HAE” (Putting a Face on HAE), sponsored by Biocryst.

Valencia: Giving Visibility to HAE
On 16 May, the allergy team of Hospital La Fe of Valencia set up a stand in the main hall of the hospital with information on HAE, AEDAF, and HAEi, to give visibility to this rare disease. The idea was to reach out to other patients and personnel who work in the hospital to inform them about HAE and its symptoms.

“The Rare Boy and the Talkative Little Balloon”, by Natasa Angjeleska
In addition, to coincide with hae day :-), there was a presentation of the Spanish translation of HAEi’s Regional Patient Advocate, Natasa Angjeleska’s children’s book, “The Rare Boy and the Talkative Little Balloon” (“El niño raro y el globo parlinchín”). Natasa’s book was translated into Spanish by AEDAF members Patricia Rebe and Ignacio Ballester, and the translation was presented on 15 May during an online session on the YouTube channel of the University of Alicante’s Mario Benedetti Center for Iberoamerican Literary Studies. We thank Natasa for her help and enthusiasm in helping Patricia and Ignacio to translate and present her charming book, and we hope to cooperate with her in the future to continue translating into Spanish the children’s books in her series. The translation is available under Recursos on AEDAF’s website and on the HAEi Youngsters’ website.

Finally, patients and physicians gathered in other hospitals around Spain, including in Barcelona and Almeria, to commemorate hae day :-) 2025 and to raise awareness and educate about HAE. We hope to continue in future years with this level of activity and commitment to raise awareness and improve the lives of HAE patients in Spain and around the world.

From Marijk Beekman-Kortekaas, President, HAE the Netherlands

Members’ Day: Connection, Laughter & A Fresh New Vibe
On 15 June 2025, something new sparked within our association: the very first Members’ Day, and what a fantastic day it turned out to be! We traded the usual information-packed agenda for a fresh format; one that put personal connection front and center.

We met at Mooie Boules in Delft, a cozy venue that helped set a relaxed tone. In previous gatherings, we noticed how much people appreciated simply having time to talk, yet the busy program often left little room for that. So this time, we dialed things down and opened things up, and it truly made all the difference.

We started the day with a short but meaningful general meeting. Updates were shared and insights exchanged. After that, we enjoyed an extended lunch where conversations flowed effortlessly. What made it extra special was the vibrant mix of attendees: young, older, and everything in between. It really reflected our diverse and engaged community.

Then came the fun: pétanque, Jenga, Dutch shuffleboard, and plenty of games that sparked laughter and a pinch of playful rivalry. People warmed up quickly and soon every turn, toss, and win was met with cheer and conversation. The energy was light and lively; exactly what we had hoped for.

It was our first time trying out this format, and it worked surprisingly well. We left with a smile and already some excitement about the next edition.

Save the Date: November 22 – Information Day in Breukelen
We’re already looking forward to it: on Friday, November 22, 2025, we’re hosting our Dutch annual Information Day, once again at the familiar Hotel Van der Valk in Breukelen.

The full program is still taking shape, but we can already share an exciting new feature: this year marks the first-ever youngsters program. With it, we’re creating a space where younger participants can connect, feel seen, and join in their own way.

The registration link will go live soon via our website. As soon as the full agenda is ready, we’ll keep you updated.

We hope to see you there. Will you be joining us on November 22?

Empowering Young Voices: Noa Joins HAEi LEAP 2025
This year, we’re proud to celebrate a special milestone: Noa’s participation in the HAEi LEAP program.

Noa joined this year’s cohort with enthusiasm and curiosity, representing our community with warmth and dedication. From workshops on storytelling and leadership to connecting with peers from around the world, Noa embraced every challenge and opportunity. We’re especially excited to see how her project will unfold in the coming months. This project is a reflection of her creativity and commitment to making a difference.

Programs like HAEi LEAP show how powerful youth involvement can be. They don’t just build skills; they build bridges, confidence, and a stronger future for the HAE community.

Well done, Noa; we’re cheering you on every step of the way!

From Arbia Barhoun, HAE Tunisia

Hereditary Angioedema Patients’ Meeting in Tunisia
A meeting of angioedema patients affiliated with the Tunisian Association for Angioedema was held at the Sheraton Hotel in Tunis on April 26, 2025. Many thanks to HAEi for their support and assistance in the success of this meeting, which represents a starting point in the progress of achieving our desired goals.

Thank you, Ms. Maria Ferron and Mr. Mohamed Osman, for your efforts and dedication to helping us. On behalf of myself as a patient and a patient caregiver in Tunisia, and on behalf of all of them, I want you to know that what you are doing is among the most noble and humanitarian of acts.

The effects of the meeting were evident from the first hours of it, as the patients got to know each other, which led to a feeling of unity, solidarity, security, and enthusiasm. They learned more about this rare disease and our global organization. They learned that they are not alone in struggling with this disease, that treatment exists, and that it is not impossible to acquire it. They felt like a family, and they believed they could achieve their goal by joining hands and working together.

A group of patients has started on WhatsApp, and the actual work has begun in writing requests to obtain the medicine, with the support of the medical team in Tunisia, headed by Dr Mustafa Belkahia, who is making a great effort with us.

In the end, this meeting brought smiles to patients’ faces and hope back into their hearts. We are grateful for what you do for us and for all patients around the world.

From HAE Ukraine

This spring, our association carried out a series of events.

From April 1 to May 31, we joined the flash mob organized by haeday.org, adding our own activities.

We translated the brochure “Women with HAE”, which is published on the website of the international organization and is available for reading here.

HAE specialists conducted educational seminars in April and May to raise awareness among doctors and medical professionals across all regions of Ukraine.
The patient association, with the support of “Takeda”, the Polish “Healthcare Education Institute”, and the technical organizer “Medical Internet Systems”, held the Second All-Ukrainian Scientific and Practical Conference on HAE – “Understanding HAE to Improve Quality of Life” – with the participation of expert doctors from the Central, Western, and Southern regions.

The conference took place on May 16–18 in the city of Truskavets, with 72 participants.

Our beloved experienced doctors – Liudmyla Zabrodska, Anastasiia Bondarenko, Tetiana Bondarenko, Khrystyna Lishchuk-Yakymovych, and Liudmyla Samoilenko – made this meeting rich, valuable, and unforgettable.

The program included introductions of new association members, speeches by the president of the HAE association, Nataliia Formaniuk, and board members Mariia Matkivska, Liudmyla Mekhed, and a representative of the public organization for primary immunodeficiencies – Oksana Strielnykova.

An important step was the joint creation of a patient guide about the disease and an action plan for seeking medical care.

In the form of an interactive role-play, volunteers participated and tried themselves in the role of patient rights defenders at a doctor’s appointment. They practiced safe injection techniques and discussed important questions regarding the disease.

For the first time, a separate program for children was developed, which included an educational lesson on HAE presented by speakers and quizzes with prizes.

Educators and animators worked with the children, additionally, leading physical exercises, competitions, games, dancing and singing, drawing, and filling the atmosphere with joyful emotions!

The conference and events allowed patients and their families to share experiences and receive emotional support.

Speakers’ presentations contributed to a better understanding of HAE, emphasized the importance of screening family members, keeping diaries, and accessing prophylactic treatment where possible.

Join local and international events to learn more about HAE and support us! Share information about HAE on social media and follow our updates.

Together, we can make life for people with HAE better and safer.

From HAE UK

HAE UK CEO at EAACI
Our CEO, Angela, joined a distinguished panel at the EAACI conference in Glasgow, speaking on bi-directional decision-making alongside Dr. Sorena Kiani, Dr. Danny Cohn, and Dr. Marie Campbell.

hae day :-) Success
hae day :-) was a hit! Our social media campaign on Shared Decision Making reached wide audiences, with strong engagement and shares from members and beyond – helping to raise awareness of HAE.

New Treatments on the Horizon
We’re working hard to gain approval for two new HAE treatments, which we hope will be available to UK patients soon.

New Patient Journey Videos
Our website now features powerful new videos showcasing real HAE patient stories of two of our members, and how Shared Decision Making has transformed their care.

Looking Ahead
Next, we’re focusing on improving mental health support and starting preparations for a major Rare Disease Day event in 2026.

From Jess Meyers,  Communications and Advocacy Manager, US HAEA

US HAEA Publishes First-Ever Study Showing the Number of People Diagnosed with HAE in the United States

The HAEA designed this research project to provide a credible estimate of how many people in the US have been diagnosed with HAE. The often-quoted figure of 1 in 50,000 comes from older European studies and only reflects HAE caused by C1 inhibitor deficiency. Our new analysis offers a broader, U.S.-based estimate that includes all forms of diagnosed HAE—addressing a long-standing gap in understanding the true prevalence of the condition.

Recently published in a top rated peer-reviewed medical journal, this landmark study featured collaboration with leading HAE experts and specialists in data mining and demographic analysis.

Our goal was to determine, for the first time, how many people in the U.S. are living with HAE—across all known types. To do this, we had to work around a key challenge: there’s no dedicated diagnosis code for HAE in the U.S. billing system. So we developed and validated a unique model that combined a variety of data sources, including insurance claims for HAE-specific medications. Expert HAE physicians then reviewed anonymized records to confirm whether those cases truly reflected HAE.

We now estimate that nearly 10,000 people in the U.S. have received a diagnosis of HAE. As noted earlier, this number includes all forms of the condition—not just those caused by C1-INH deficiency—and provides the clearest picture yet of the HAE population in the U.S.

Getting this study published in a respected medical journal is a major milestone for the HAEA community. It gives us real numbers to back up what we’ve long known—that HAE affects more people than older estimates suggested. With this solid, U.S.-based data, we can show we are a bigger force than anyone previously thought. And that puts us in a much stronger position to protect what matters most to people with HAE and their families.

You can read the full study in the Annals of Allergy, Asthma, and Immunology here!

US HAEA Celebrates an Unforgettable 2025 National Summit in Baltimore, Maryland
The 2025 HAEA National Summit, held in Baltimore, Maryland, was an incredible success! From July 10–13, more than 1,400 HAEA community members, including people with HAE, their caregivers, medical professionals, researchers, and industry partners, came together for an unforgettable weekend of education, empowerment, and connection.

See the article in this edition of Global Perspectives for a detailed overview of this exciting event.

HAEA Community Blog
The HAEA community blog features personal narratives detailing the daily struggles of managing HAE and stories of resilience and advocacy. The HAEA Community blog has empowered people with HAE, their caregivers, and other HAE advocates to navigate their HAE journey with confidence.

Below are excerpts from some recent Community Blog:

Ally B: My Experience at the HAEi Leap Program

“This experience gave me more than advocacy skills. It gave me lifelong friendships with incredible people from across the globe. Some were patients, others were caregivers, but all of us shared a common drive to make a difference in the HAE community”.

Ohm S: From Mystery to Diagnosis: A Decade of Resilience in the Face of Hereditary Angioedema

“Despite these difficulties, I’m confident that with more awareness, education, legislation, and advocacy surrounding HAE, there will be developments in this space in the near future. I’m dedicated to supporting others in the community affected by this disease, and I encourage everyone to contribute in their own way, regardless of their illness or condition.”

Zach N: From Tennessee to DC: Raising HAE Awareness on Capitol Hill

“Over these next few days, we honed in on specific and pertinent policies vital for the rare disease community, not just for HAE but for all thirty million Americans in the United States diagnosed with a rare illness. With that policy in hand and heart, we took to the Capitol, speaking with our representatives and political leaders and urging them to be leaders in making a better and healthier America.”

Explore the HAEA Community Blog and discover the heartwarming stories, invaluable insights, and empowering voices that unite us in the journey of living with HAE!

Access the blog at haea.org / News / Community Blog.