A Year of Growth, Connections, and Inspiration: HAE Australasia’s 2024 Highlights and Goals for 2025

It’s been a fantastic year for HAE Australasia, filled with exciting developments, new faces, and powerful connections that have made 2024 a year to remember. From expanding our team to hosting dynamic webinars, growing our membership base, and making impactful connections on the global stage, we’ve truly stepped up our efforts to support people living with HAE across Australasia.

A Year of Growth and Expansion

One of the most exciting highlights of this year has been the growth of our membership and the increased capacity to connect with more people than ever before. Thanks to the hard work of our dedicated team, we’ve ramped up our social media presence and armed our members with the tools, tips, and information they need to live their best lives with HAE. We’ve strengthened our online presence, ensuring that vital resources are just a click away for those who need them.

HAEi Global Leadership Workshop, Copenhagen

In October, 5 members of our 6-strong team ventured to Denmark for the 2024 HAEi Global Leadership Workshop, where we had the opportunity to forge new connections with HAE advocates and medical professionals worldwide. This inspiring experience honed our advocacy skills and introduced us to a new Relocation Tool, a Conference Planning tool, and the amazing work of the HAE Youngsters and their fabulous podcast. We left Denmark with fresh perspectives, new friends, and a renewed passion for advancing equal care for people with HAE in Australasia.

Webinars That Make a Difference

This year, we were proud to launch a successful three-part webinar series to keep our members informed and engaged. Despite the challenges of spanning 2 countries and up to 7 time zones, we reached more than 60 participants (huge for our membership size), sharing essential knowledge on topics like HAE Basics, Women’s Health, and Children’s Health. We’re committed to providing our community with the latest tools, research, and support to help manage HAE and improve quality of life.

What was new in 2024?

Early in 2024, we introduced new videos to our website sharing the powerful stories of teenagers and young adults with HAE, highlighting how access to modern prophylactic treatments transformed their lives. These videos revealed the profound improvements in quality of life for those with access to preventative therapies, contrasting life before and after treatment. A physician’s perspective reinforced the benefits of managing HAE proactively rather than waiting for attacks. Currently, only Australia offers access to these modern therapies in the region. By showcasing these experiences, we aim to strengthen our advocacy efforts and drive change for broader access to preventative treatment options.

In 2024, we also overhauled our website, adding new pages that better serve our community. Our new Youth page and linked toolkit offer a wealth of resources for younger members, while our Children’s page now includes valuable links to the Brady Club and the Brady Club Activity Books. We also launched a dedicated Clinical Trials page to inform members about ongoing regional research and trials and a Webinar Hub where members can submit suggestions for future topics.

To help us manage the growing workload, we were thrilled to welcome a new Operations Coordinator to the team in March. This role has been instrumental in overseeing social media, website updates, and other operational tasks, allowing our team members to focus on their areas of expertise.

Finally, we were honored to have Dr. Alberto Pinzon Charry join us this year to share insights on children with HAE. Prof. Connie Katelaris has continued supporting our webinars, providing invaluable expertise and keeping us informed about the latest clinical trials. Our ongoing collaborations with physicians have been vital to our success this year.

Looking Ahead to 2025

The momentum doesn’t stop here! In 2025, we’re excited to continue expanding our reach and growing our membership base. We’ll use our social media platforms and revamped website to connect with more individuals across Australasia, especially focusing on youth engagement. We recognize the importance of supporting younger members and helping them feel connected and empowered, and we plan to dedicate more resources to this in the year ahead.

Another major goal for 2025 is raising funds for in-person patient meetings. We’re thrilled to have secured several travel grants to send a strong group of members to the 2025 HAEi Regional Conference APAC in Manila this March. We can’t wait to share what we have learned and successes with you at the end of next year!

Looking Forward to Even Greater Things

We’ve accomplished so much in 2024, and we’re energized for the year ahead. With a growing team, an expanding network of supporters, and a community of people with HAE who continue to inspire us daily, we’re confident that 2025 will bring even more exciting opportunities to make a difference. Here’s to another year of growth, connection, and progress for HAE Australasia!

Bangladesh has been a member country since 2019. Angioedema Bangladesh is the official name of the member organization. The patient group now has 25 members.

As our roadmap, we are focusing on educating the physicians and raising awareness among the patients on the management of HAE. Consequently, we arranged a webinar on 16 November of this year. It was a very significant event in which almost 40 local and international physicians and specialists participated. It potentially helped the doctors and patients with HAE management, treatment, and care.

In the future, we are committed to arranging patient meetings, conferences, and webinars to provide a better understanding of HAE and its management.

My greetings from Cuba with the desire to continue being an active part of the great HAEi family.

2024 has been a fruitful year for HAE Cuba. We are a young organization that wants to acquire work experience and continue to be involved in the International patient Community.

1. Our organization’s first participation in the Regional Conference of the Americas, represented by three patients and a doctor, marked an important turning point in our desire to establish ourselves as a country under the HAEi umbrella.
2. Arriving in Copenhagen, represented by a patient and two doctors, and participating in both world forums was an unforgettable experience that gave us great relationships and teachings.
3. We created our WhatsApp group for patients. We started updating the national registry with the support of the Institute of Hematology and Immunology of the Ministry of Public Health of Cuba (the medical center responsible for the disease in the country), which has allowed us to realize that the Cuban HAE family is larger and is dispersed throughout the island, that we need to be more united to face the challenges that the disease imposes on us and to promote solidarity among ourselves. This has undoubtedly been the fundamental achievement of our member organization this year.

We are always grateful to our regional advocate, Javier Santana, and other member organizations from other countries with which we maintain excellent communication.

HAE Junior marks its 5th anniversary with a special digital campaign

HAE Junior patient organization announces the launch of a birthday digital campaign to celebrate 5 years since registration. Together, we want to remember the main achievements and milestones our association has reached with the support of patients, their families, healthcare professionals, and partners in the Czech Republic and abroad.

Starting in December, we will reveal anniversary wishes and messages received from children and teenagers with HAE, their parents, healthcare professionals, and partner organizations every day. These messages reflect, from various perspectives, the importance of HAE Junior’s activities for the benefit of HAE patients and their loved ones. Thus, the campaign is an opportunity not only to celebrate but also to express mutual support and inspiration among community members, which is in line with our organization’s mission.

The digital part of the campaign will run on both HAE Junior’s social media (Facebook, Instagram, and LinkedIn) and on the anniversary website, where we are opening a virtual advent calendar in December. The campaign, which is to continue until Christmas, will also include printed materials (in the Czech language only). Wishes from children, young patients, and other community members will be unveiled one by one, offering a personal insight into the activities and support HAE Junior provides.

We tHAEnk everyone who sent us their wishes and messages for this very special campaign!

The project is carried out with the support of our partners: Amberplasma, KalVista, Pharvaris, Swixx Biopharma, and Takeda, Czech Republic.

On November 30, 2024, the first face-to-face club meeting of the Hungarian Patient Organization after COVID-19 was held. The location was the clinic of the Semmelweis University of Medicine. There are 220 registered patients in Hungary, of which 165 are association members.

The event was attended by 50 people, 30 of our fellow patients, and representatives of pharmaceutical companies from CSL Behring, Pharming, Swixx BioPharma, and Takeda. Our doctors also participated in the event: Prof. Dr. Henriette Farkas is the head of the Hungarian ACARE center; her right hand Dr. Hanga Horváth; Lilian Varga, head of the Complement lab; Dr. Beáta Visy is a doctor at the Madarász utca Children’s Hospital, who helps the Hungarian HAE center in many HAE trials, Prof. György Harmat, who was the general director of the Heim Pál children’s hospital and continuously helps and has helped with the care of HAE children, and Judit Bali, who brings together and coordinates the work of the Hungarian ACARE center.

The program of the event consisted of the following agenda:

The Patient Organization welcomed the participants and thanked them for their interest and for taking the trouble to participate. Dr. Prof. Henriette Farkas also greeted the participants.

A report on the patient organization’s work and financial situation this year, as well as the tasks ahead of us next year. Among these, there are two important tasks: the renewal of the foundation document of the association, which is already more than 25 years old. The patient organization must comply with the new legal requirements. Among our other tasks, we can mention participation in tenders and their preparation…

We also reported on the 2 most important events: The Day of Rare Diseases, held in Sopron in February, and the GLW and GAF, held in Copenhagen in October.

Then, Dr. Hanga Horváth summarized the research results achieved in the past year and the current events related to drug supply.

Then, there was a short discussion between patients and doctors about current issues and topics of interest to everyone. We agreed that such events will still be needed in the future in order to strengthen each other …

First in-person patients association meeting of HAEIPA at Hyderabad, India

Hi, I want to send a write-up from India about patient association activities.

After getting the HAE India Patients Association registered a few months back, we organized our first in-person regional Patient meeting in Hyderabad for patients living in the southern part of the country.

Despite the fact that it was arranged at a very short notice of 2 weeks, it was well attended, and we had about 50 participants (patients and caregivers) sharing their stories and learning from the experts.

The meeting was initiated by Dr. Shaibal Guha, founder & treasurer of HAEIPA, welcoming all the participants.

The schedule of the meeting and the need for having a patient organization were explained to all by Ms. Pravalika, the Hon. President of HAEIPA.

Dr. Spurthy Reddy Chitta, a pediatric rheumatologist of Hyderabad, sportingly took time out to come over and give tips about HAE care in children.

Dr. Anuradha Udumudi, the founder of Genentech, a genetic diagnostic and research company, was kind enough to spare time to talk about genetic diagnosis, genome sequencing, and prenatal diagnosis of HAE.

The meeting was blessed by the good wishes of Ms. Fiona Wardman, the executive vice president of Global advocacy of HAEi. She talked about the various activities being done by HAE International.

Patients were further enthused by the joining of Ms. Fanny Schappler,  the regional patient advocate for South Asia, who explained to them the meaning and importance of advocacy.

The presence of Dr. Ankur Jindal,  professor of pediatric rheumatology at PGI, Chandigarh, and the founder of HAESI, the nodal doctors association dealing with HAE in India, was the icing on the cake. He painstakingly took the patients’ queries and answered them in simple language.

As a whole, pre and post-lunch sessions were very well attended by the patients,  both local and from far off, and excited discussions continued till the evening,  when it was time to conclude.

Dr. Shaibal Guha thanked the participants,  as well as the sponsors (Takeda Pharma),  for a very successful first patient meeting ever since the national association was registered.

Dear HAE community, HAE Indonesia has made a few small strides in 2024 towards better awareness for HAE in Indonesia.

To share our experience and also to learn about others’ experiences, I met up with Ms. Suchitta Shee Kengtanyagarn (henceforth Shee) from HAE Thailand and also participated in a virtual roundtable session organized by Deloitte, together with Ms. Shee and Ms. Makiko Matsuyama, President of HAEJ, to share the realities and challenges of HAE in our respective countries. This is the first time HAE Indonesia has participated in such activities together with other member organizations in the region.

HAE Indonesia is also connecting and working with medical students in Surabaya, Indonesia, to introduce them to HAE and to assist them in presenting about HAE in their seminars to help raise awareness and interest in the condition in the medical schools.

For 2025, we want to help more people with HAE who remain undiagnosed. Increasing awareness about the condition among the public and health professionals will move us closer to shorter delays in diagnosis. The long-term goal is to improve the availability and access to treatment in Indonesia and hopefully help bring treatments to other countries in the region.

First of all, 2024 marked the 10th anniversary of the HAEJ’s establishment! It’s hard to believe that it’s already been 10 years since our launch. This year has been a significant one for HAEJ, as we’ve taken on new challenges and actively participated in academia.

Starting with hae day :-) in May, the DISCOVERY Consortium, an industry-academia HAE consortium, and HAEJ collaborated to conduct a nationwide light-up campaign! We decided on lavender purple as HAE’s theme color and were able to have 22 symbolic towers and facilities across Japan illuminated. Among them, we visited Yokohama City and Kumamoto City, which supported hae day :-) as municipalities, to greet them and discuss future collaborations.

We also actively exhibited at medical conferences, and I gave a speech at the conference as a speaker representing the patient association. After the lecture, many doctors visited our booth to talk, allowing us to network with numerous doctors and gather information from various regions. Perhaps participation in such conferences can be a reference for other countries. We also actively learned and exchanged ideas from the perspective of genetic counseling. We need to continue discussing how to effectively utilize the support of genetic counselors and communicate this to our patient association members.

We also appeared on 2 TV programs! This was also thanks to our close collaboration with pharmaceutical companies. Through media roundtable events and direct contact with reporters, we achieved media exposure by continuing our steady appeals. We also participated in a project to increase the number of doctors who can diagnose HAE in Vietnam, together with the Japanese patient association representative. Since Japan already has fairly advanced treatments among Asian countries, we believe that it can serve as a model and provide support for other Asian countries. I hope we can continue to actively communicate and share best practices.

Highlights of 2024

• On October 30, 2023, the Chamber of Deputies of Mexico, by decree, declared May 16 of each year “National Hereditary Angioedema Day”. For this reason, May 16, 2024, was officially celebrated in Mexico, for which the Symposium: “NATIONAL DAY OF AEH, AN ANTHROPOLOGICAL VISION” was held. In which doctors, patients, caregivers, and authorities from the health sector participated, as well as the National School of Anthropology and History of the National Autonomous University of Mexico. >> You can read more about HAE Mexico’s activities for hae day :-) in the ‘hae day :-) 2025′ feature.
• Creation of the AMAEH award in recognition of patients, caregivers, health sector personnel, and anyone who contributes through their courage, tenacity, and resilience in the face of AEH. The first three prizes were awarded on May 16, 2024.

Hopes for 2025

• Accredit an AEH center in Mexico.
• Start with the national registry of patients.
• Have an AMAEH website.

AMAEH News

• Launch of ORLADEYO in Mexico on August 17, 2024
• Awareness meetings at the Mexican College of Allergy and Clinical Immunology.

New AMAEH Logo

At the initiative of AMAEH, the Mexican Group of Specialists in Hereditary Angioedema (GEMAEH) was formed.

It’s hard to believe that we’re already wrapping up 2024. Time seems to have flown by. So many great things have happened since January. We’d love to share a few highlights with you.

At the beginning of the year, HAE The Netherlands identified some focus points for 2024. We wanted to grow our network, we wanted to take a step forward in providing information about HAE, and our most important focus point was bringing the community together.

We managed to be successful on all 3 points.

Our network grew significantly. We managed to build relationships with several HAE specialists, strengthened our international network by connecting with several sister organizations, and got in contact with all the pharmaceutical companies within the HAE community. Besides that, we built a network within the Dutch Rare Disease Community. We believe in partnership to improve the lives of people living with rare diseases, particularly those with HAE. We also became members of RIPAG, the patient advocacy group of ERN-RITA, the European Reference Network for Rare Immunological Diseases. Within this network, we work together with HAE Junior, our Czech sister organization, to bring the HAE patient perspective into the network.

In the field of providing information to the Dutch HAE community, we celebrated the first edition of our own magazine. This is a magazine that provides articles about HAE, our organization, and our HAE specialists. Furthermore, it includes patient stories. We’re hoping to publish this magazine twice a year. We also completed the Dutch and Belgian translations of Understanding HAE and Women with HAE. Thanks to the hard work of the HAEi team, these translations will soon be available on the website. In 2025, we will have both booklets printed to distribute to the Dutch HAE community.

We also managed to bring the Dutch HAE community together for a fun day full of informative presentations and peer support. On 16 November, we organized our annual patient meeting. We saw a significant increase in the number of participants compared to 2023. We are pleased to see this significant increase because it is important and beneficial for people living with HAE to come together.

On this day, we enjoyed excellent presentations about the pathophysiology of HAE, ethical dilemmas in research, and current and future treatment options.

The interaction between the speakers and the participants was very special. So many good, informative questions were asked, and we ran over our planned time schedule. We were very pleased that all the speakers stayed to join us for lunch. During lunch, we observed a lot of fun conversations between speakers, patients, and caregivers. There was also a lot of peer support going on. Bringing the community together is so important.

In the afternoon, we enjoyed a special presentation from our RPA, Maria Ferron. She inspired the participants to become advocates and stated that it’s important that patients not only advocate for themselves but that they help the patient organization to advocate for the whole community. Maria knows how to bring the HAEi perspective to the countries under her umbrella. She also shared with us some preliminary data on the management of HAE in Europe study HAEi did this year. We’re very grateful that she and Debs were willing to share this with us, even though the data is still being analyzed. We can’t wait to read the finished report. All in all, it was a fun day full of enjoyable conversations. Next year, we’re planning to organize more frequent meetings to bring our community together.

Looking ahead to 2025, we express our hope that the global HAE community will become even more connected. By coming together, we can collectively achieve our goal of a normal life for all patients.

To conclude, we would like to wish everyone happy holidays.

HAE SA 2024 YEAR IN REVIEW

Our organization has had a busy, productive year raising awareness for HAE!!

In the run-up to Rare Disease Day 2024, we released a series of 6 patient video stories, with our patients highlighting the difficulties in their journeys to getting a diagnosis and the importance of having a strong patient support network.  Our annual patient meeting in Cape Town on the 6th of April was attended by doctors and patients from across the country. For the first time, we were able to offer travel grants to our patients and caregivers, ensuring record attendance and a hugely successful, informative event. We have also hosted a number of webinars for doctors and patients, including “Women with HAE”, on the 21st of November, where Prof. Henriette Farkas presented an informative session on the topic. On hae day :-), we launched our mental health program, “Mental Health Matters”, starting with a series of 6 videos., Our program is ongoing, and we hope to offer continued support for our patients and caregivers.

Our team attended the 2024 HAEi Global Leadership Workshop in Copenhagen in October, and we look forward to seeing our colleagues and friends at the EMEA Conference in 2025.

HAE S.A. has made significant progress over the past year and could not have done so without the dedication of our physicians and the support and guidance of our colleagues and friends at HAEi and within the greater rare disease community. As we look back at another successful year of HAE advocacy, we look forward to the challenges that face us in the new year.

This year, in addition to holding lectures in the North, Central, and, South, East Districts like last year and 2 patient meetings.

Although not many patients participated in the event, we can see that new patients are willing to come forward and share, which I think is great.

We still hope that maintenance injections with relatively few side effects will become popular as soon as possible in 2025.

A Milestone Year for the HAEA Community: 2024 Year in Review

As the year draws close, we reflect on the collective success of our HAEA community in 2024. This year was marked by progress, innovation, and shared achievements that have paved the way for an even brighter future.

Highlights of 2024 at the US HAEA include:

• An HAEA-initiated research project that included well over 500 HAEA friends has resulted in a ground-breaking HAE-specific tool that measures Quality of Life for people with HAE in the United States. The prestigious medical journal–Annals of Allergy, Asthma, and Immunology–recognized the value of this project by publishing an article documenting the development and testing of this groundbreaking tool. The publication can be viewed by clicking HERE.
• HAEA Health Team Advocates offered our community invaluable assistance in resolving insurance denials and delays, guiding and following up on referrals to expert HAE physicians, and providing answers to countless HAE-related questions.
• This year, we introduced a new scholarship opportunity for Aspiring Healthcare Professionals, designed to provide financial support to those in the HAE community pursuing a career in any healthcare-related field.
• 250 attendees celebrated academic achievement and community spirit at the 2024 HAEA Scholarship Gala. This event reinforced the HAEA’s commitment to empowering and supporting the next generation of leaders. You can watch a recap of this event by clicking HERE.
• During the 2024 Virtual HAE IN-MOTION® and awareness events in Boston, Dallas, and Chicago, over 350 participants walked over 10,000 miles to raise HAE awareness in their communities.
• This year, we launched the HAEA academy, an online platform that offers a range of free online courses aimed at supporting HAEA friends at every stage of their HAE journey. You can access courses on topics like clinical trials, Medicare basics, the HAEA Shared Decision-Making Tool, and more by clicking HERE!
• In 2024, we hosted 9 HAEA Treatment Education Series live and on-demand webinars – designed to serve and inform the HAE community about available treatment options – that registered over 50,000 views.
• With over 21,000 plays, the HAEA Podcasts, including HAE Speaks and #BeyondHAE, continue to engage wide audiences with shared stories from HAEA community members and educational content.
• In 2024, HAEA Health Team Advocates successfully recruited community members for 7 clinical trials that offer promise for additional HAE treatment options.
• During the 2024 hae day :-) campaign, thousands of HAEA friends posted photos with an hae day :-) poster that included personalized messages about their hopes for protecting future generations.
• Since its launch, the HAEA Community Blog has shared 30 articles, reaching over 50,000 readers and fostering a sense of connection and support within the HAE community.
• This summer, the US HAEA gathered a large group of HAEA Youth Interns and Youth Leadership Council members for a 2-day leadership training in Washington, D.C. These leaders-in-training learned about social media advocacy, public speaking, and how to share their story while advocating for the HAE community.
• The HAEA Grassroots Advocacy Network – a group of 1,021 volunteer advocates dedicated to supporting people with HAE through active participation in public policy issues – wrote letters and conducted meetings to support legislation related to a variety of issues that affect people with HAE.
• On July 15th, over 200 HAEA advocates visited 113 congressional offices on Capitol Hill to deliver a vitally important message requesting action on matters that affect the future of people with HAE and their families. You can watch a recap of this event by clicking HERE.

We wish everyone in the HAEi community a joyful and healthy holiday season and a happy, healthy, and productive 2025!