Living with hereditary angioedema (HAE) can feel overwhelming, but you don’t have to navigate it alone. A variety of resources and communities can help you manage this rare condition with confidence and ease.
Hereditary angioedema (HAE) is a rare condition that affects 1 in 50,000 to 1 in 150,000 people worldwide. This chronic condition causes swelling throughout your body — particularly in your skin, gastrointestinal tract, and upper airway.
Living with a rare condition may feel lonely at times, and you may not know where to turn for advice. If you or a loved one receives a diagnosis of HAE, finding support can make a big difference in your daily life.
Some organizations sponsor awareness events such as conferences and walks. You can also connect with people on social media pages and online forums. Additionally, you may find that talking with loved ones helps you cope with the condition.
Here are some resources you can turn to for HAE support.
Organizations dedicated to HAE and other rare diseases can keep you updated on treatment breakthroughs, connect you with others affected by the condition, and help you advocate for those who are living with the condition.
U.S. Hereditary Angioedema Association
One organization promoting awareness and advocacy for HAE is the U.S. Hereditary Angioedema Association (HAEA).
The HAEA’s website contains a wealth of information about the condition. The organization offers free membership, which includes access to online support groups, peer-to-peer connections, and information about HAE medical developments.
The HAEA even hosts an annual conference to bring members together. You can also connect with others on social media via the organization’s Facebook, Twitter, Instagram, YouTube, and LinkedIn accounts.
The U.S. HAEA is an extension of HAE International, an international nonprofit organization connected to HAE organizations in 75 countries.
HAE Day and annual global walk
May 16 marks HAE Awareness Day worldwide. HAE International encourages everyone to participate in any type of physical activity to help raise awareness for the condition. You can do these activities individually or ask a group of friends and family to take part.
The activity challenge starts on April 1 and ends on May 31. You create a profile on the HAE Day website and record the time you spend on any physical activity, such as walking, reading, gardening, or circuit training.
The organization keeps a tally of all activities and converts these into steps. In 2024, participants set a record with more than 179 million steps taken.
Participants are encouraged to share photos of their activities on the website. You can earn badges for regularly participating in physical activities. There’s also an opportunity to join a team.
You can visit the HAE Day website to learn more about this annual advocacy day and the activity challenge. You can also connect with HAE Day on Facebook, Twitter, YouTube, and LinkedIn.
National Organization for Rare Disorders (NORD) and Rare Disease Day
Rare diseases are conditions that affect fewer than 200,000 people. You may benefit from connecting with other people who have rare diseases such as HAE.
The NORD website has a database that includes information on more than 1,200 rare diseases. You can access a patient and caregiver resource center with fact sheets and other resources. Also, you can join the RareAction Network, which promotes education and advocacy about rare diseases.
This site also provides information about Rare Disease Day, an annual advocacy and awareness day that falls on the last day of February each year.
Facebook can connect you to several groups dedicated to HAE. One example is the group Hereditary Angioedema, which has more than 4,000 members. It’s a closed group, so the information is visible only to approved members.
You can network with others to discuss topics such as HAE triggers and symptoms and different treatment plans for the condition. Plus, you can give and receive tips on managing aspects of your daily life.
Your friends and family can provide support as you navigate life with HAE. Your loved ones can reassure you, advocate for you to get the right kinds of support, and act as a listening ear.
You can direct friends and family who want to support you to the same organizations you visit to learn more about your condition. Educating friends and family about the condition will allow them to better support you.
In addition to helping diagnose and treat your HAE, your healthcare team can provide tips to help you manage the condition.
Whether you’re having trouble avoiding triggers or are experiencing symptoms of anxiety or depression, you can go to your healthcare team with your questions. They can give you advice and refer you to other doctors if necessary.
Reaching out to others and learning more about HAE will help you navigate this lifelong condition. Several organizations and online resources focused on HAE are available to help you connect with others living with this condition and provide resources to help you educate those around you.