Hereditary angioedema (HAE) is a rare condition that affects about 1 in 50,000 people. This chronic condition causes swelling throughout your body and can target 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 like conferences and organized walks. You can also connect with others on social media pages and online forums. Besides these resources, you may find that talking with loved ones can help you manage your life 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 to others affected by the condition, and help you advocate for those living with the condition.
US HAE Association
One organization promoting awareness and advocacy for HAE is the US HAE Association (HAEA).
Their website contains a wealth of information about the condition, and they offer free membership. A membership includes access to online support groups, peer-to-peer connections, and information about HAE medical developments.
US HAEA is an extension of HAE International. The international nonprofit organization is connected to HAE organizations in 75 countries.
HAE Day and annual global walk
May 16 marks worldwide HAE Awareness Day. HAE International organizes an annual walk to raise awareness for the condition. You can walk individually or ask a group of friends and family to take part.
Register online and include a goal for how far you plan to walk. Then, walk sometime between April 1 and May 31 and report your final distance online. The organization keeps a tally of how many steps people walk across the world. In 2019, participants set a record and walked over 90 million steps total.
National Organization for Rare Diseases (NORD) and Rare Disease Day
Rare diseases are defined as conditions that affect less than 200,000 people. You may benefit from connecting with those who have other rare diseases like HAE.
The NORD website has a database that includes information on more than 1,200 rare diseases. You have access to a patient and caregiver resource center that has fact sheets and other resources. Also, you can join the RareAction Network, which promotes education and advocacy about rare diseases.
This site also includes information about Rare Disease Day. This annual advocacy and awareness day falls on the last day of February each year.
Facebook can connect you to several groups that are dedicated to HAE. One example is this group, which has more than 3,000 members. It’s a closed group, so the information stays within the group of approved individuals.
You can network with others to discuss topics like 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.
Beyond the internet, your friends and family can provide you with support as you navigate life with HAE. Your loved ones can reassure you, advocate for you to get the right kinds of support, and be a listening ear.
You can direct friends and family who want to support you to the same organizations that you visit to learn more about the condition. Educating friends and family on the condition will allow them to better support you.
In addition to helping diagnose and treat your HAE, your healthcare team can provide you with tips to manage your 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. There are several organizations and online resources focused on HAE. These will help you connect with others living with HAE and provide resources to help you educate others around you.