Who we are
Welcome to HAE International
HAE International is a global non-profit network of member organizations dedicated to raising awareness of hereditary angioedema and improving the lives of people with HAE.
We are a group of compassionate HAE patients and care givers who make it our life’s work to raise awareness of hereditary angioedema (HAE), improve time to diagnosis, and fiercely advocate for approval and reimbursement of lifesaving therapies to everyone suffering from HAE.
We provide our member organizations with specially designed tools and technical assistance that promote disease education and support activities addressing the unique needs of HAE patients and their families.
HAEi is company and product neutral and enthusiastically supports drug discovery research aimed at the next generation of HAE therapies. Our great success in supporting clinical trials has resulted in a variety of approved therapeutic options. We work closely with expert physicians to continuously encourage a tailored, patient-focused approach to the use of available therapeutic options.
Mission
To lead a global network of member organizations and provide specially designed tools, resources, educational programs, and hands-on assistance to empower awareness, accelerate diagnosis, and champion access to life-saving HAE therapies.
Vision
To unite and strengthen the HAE global community, achieve a world free of barriers where effective treatments are accessible everywhere, and provide a higher quality of life for people with HAE.
Values
To fulfill the highest priority needs of our member organizations with an extraordinary level of dedication, effectiveness, and accountability, guided by compassion, kindness, and inclusivity.
News & Events
See what is happening in the world of HAE
The latest news from HAEi
Pharvaris presents clinical and non-clinical data supporting HAE development program at the 2024 ACAAI Annual Scientific Meeting
Pharvaris presents clinical and non-clinical data supporting HAE development [...]
BioCryst presents new real-world evidence showing high adherence and persistence rates with Orladeyo (berotralstat)
BioCryst presents new real-world evidence showing high adherence and [...]
Intellia presents positive results from the Phase 2 Study of NTLA-2002
Intellia presents positive results from the Phase 2 Study [...]
Astria to present at upcoming ACAAI Annual Scientific Meeting
Astria Therapeutics to present at upcoming American College of [...]
KalVistato present data at the 2024 ACAAI Annual Scientific Meeting
KalVista Pharmaceuticals to present data at the 2024 Annual [...]
EC grants orphan medicinal product designation for navenibart, Astria’s investigational therapy for the treatment of HAE
European Commission grants orphan medicinal product designation for navenibart, [...]
HAEi around the world
Click on the map to get more specific information
Regions
- All
- Africa
- Australia/Oceania
- Central America and Caribbean
- Central Asia
- East & Southeast Asia
- Europe
- Middle East
- North America
- South America
- South Asia
The flags above represent the countries with a national HAE organization. However, presently we know of HAE points on contact – mostly HAE knowledgeable physicians and hospitals – in a number of other countries around the globe. Please click on your region to learn more:
Africa – Australia & Oceania – Centra Asia – Central America & Caribbean – East & Southeast Asia – Europe – Middle East – North America – South America – South Asia
Impact of HAE
Missed opportunities due to HAE
It’s important to get the right treatment to get the most out of life
Patients report that HAE has hindered their education and work opportunities.
Getting the right treatment will allow you to live a normal life without missing out on education and job opportunities.
Percentage of patients reporting severe impact from HAE on education and career:
Resources
The HAEi resources are here for you
Our organization is a global non-profit network of patient associations and we are dedicated to raising awareness of hereditary angioedema (HAE) around the world.
We strive to improve time to diagnosis and facilitate access to and reimbursement of life-saving HAE therapies, which will enable lifelong health for all patients – no matter where they live.
Prevalence of HAE is still unknown. However, we expect the global prevalence of HAE to be approximately 1 in 30,000, which means that around a quarter million people worldwide suffer from this rare and potentially life-threatening deficiency.
Visit the Resources tab in the navigation to see more
Reach out to HAEi
Your experience and your story can help us.
At HAEi we are constantly focusing on how to improve the awareness of HAE, and how to create a better environment for timely diagnosis and access to therapies. Your experience and your story can help us. Reach out to us!
Say hello!
Your personal story, an invitation to your community’s event, local or national news, feedback, questions …
All that and much more is always welcome in HAEi’s mailbox.
So please click here, send us a message, if you have anything you want to share with us.