My name is Tony Castaldo, and I’m the President and CEO of the US Hereditary Angioedema Association (HAEA). Dealing with an HAE diagnosis is challenging and can be overwhelming. As a fellow patient, I understand the fear of the unknown you may be experiencing, and know there are many questions you are now ready to get answered. In fact, it was with these thoughts in mind, and recognizing the need for a compassionate, caring, and empathetic voice that a group of HAE pioneers set up the HAEA twenty years ago.
Since then, we evolved into an organization that focuses on your needs, and is always here so you do not have to face your HAE journey alone. We dedicated the past twenty years to supporting development of medicines that control symptoms, and enable the HAE community to experience life to the fullest. As people and caregivers who also suffer from HAE, we look upon every day as an opportunity to help members of our community thrive throughout all stages of their lives.
We invite you to join the HAEA, and benefit from working with an experienced fellow patient or caregiver who will provide all of the information and support you need to navigate through this new diagnosis. We are here to help you, and hope you take this opportunity to become part of our HAEA community.
Tony Castaldo
The HAEA is committed to helping people with HAE overcome barriers, successfully manage their HAE, and lead a normal life. Here, you can find links to important resources that will help you through your HAE journey.
Become a member and receive current disease information on HAE and FDA-approved HAE treatments. It's free and your privacy is protected.
Learn more about the HAE types, symptoms, attack triggers, latest treatments and more by downloading our free Understanding HAE Guide.
HAE Advocates help with physician referrals, peer-to-peer support, guidance on access and reimbursement for your HAE medicines, and more. We provide a wide range of personalized services for people with HAE and their families – we are here for you!
If you would like the HAEA’s help with a physician referral or assistance locating an HAE knowledgeable physician in your local area, please click below.
The US HAEA Member ID card ensures that you can always be identified as someone who has HAE, and offers key information such as your prescribed medication, contact information for your treating physician, and your family emergency contact. To order your US HAEA Member ID card, click below.
The HAEA Member Kit is a tool that serves as a personalized guide for HAEA members. You can select the resources that are relevant to you and your unique experience, and continue returning for more resources as you navigate through different stages of your life.
The HAEA takes an active role in patient recruitment for HAE clinical trials. Click below to read about current and recruiting HAE clinical trials and learn how you can enroll.
With the help of the HAEA, eight HAE therapies have received FDA approval. We support HAE research through the US HAEA Angioedema Center at UCSD, and encourage pharmaceutical companies to continue developing new HAE therapies. Click to learn more about current HAE research.
Our youth program fosters engagement and interaction at conferences, and other youth events, while helping develop a strategy to best meet the needs of the young people with HAE and their caregivers.
The Center at UCSD, in partnership with the US HAEA, aspires to improve the lives of angioedema patients throughout the world.
The HAEA unifies and empowers the HAE community. We offer a broad range of activities and programs that encourage members to educate, engage, and raise HAE awareness within their own local communities.
You can help people with HAE avoid years of needless suffering. A picture of HAE swelling is the best way to alert physicians to test for the possibility of HAE. Do you have photos of yourself during an HAE attack? The HAEA maintains a library of images that illustrate swelling attacks. The photos are part of the educational materials we provide to physicians and other medical professionals.
SHARE YOUR PHOTO
Listen to people with HAE, caregivers, and medical professionals discuss strategies to manage stress, prepare for a visit with your HAE specialist, care for a loved one with HAE, what to expect when you are newly diagnosed, the road to treatment, and much more. Download today on your favorite platform!
LISTEN NOW
Gain exclusive access to informational webinars on issues like access and reimbursement for HAE therapies, check out the latest HAEA news, and participate in virtual support groups.
JOIN NOW
This is a nationwide research project driven by you and your fellow HAE community members, where you can track and submit information about your HAE attacks, symptoms, and therapies. The data you provide is confidential and is the driving force behind new HAE research and discoveries.
JOIN REGISTRY
Everyone who has HAE knows that its symptoms are astonishingly individual. No two people (even within the same family) share the exact same triggers, severity of attacks, or even the same journey to diagnosis. Every HAE story is unique and valuable. Click below to hear from others about their experiences with HAE, and to submit your own!
SHARE YOUR STORY
Learn more about upcoming events in your area and virtual engagements, as well as ways to volunteer by clicking below.
LEARN MORE
This educational resource offers important information from HAE experts that explains HAE attacks and provides guidance on treatment options. Your efforts to share this Toolkit will support people with HAE in your community and may help identify people who have swelling symptoms, but have not yet received a proper diagnosis.
ORDER AN ER TOOLKIT
This free app was created by the HAEA just for the HAE community, and makes it quick and easy to track your HAE attacks and therapies in a user-friendly format. Create your own personal record of everyday life with HAE, and transform your data into easy-to-read visual graphs. The app is available for iPhone and Android.
APPSTORE