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Youth Leadership Council

The HAEA’s Youth Leadership Council (YLC) is a group of motivated, passionate and committed young Hereditary Angioedema Advocates. These young advocates serve as youth leaders at events, support HAEA youth program development, participate in awareness campaigns, support HAEA legislative advocacy initiatives, and more! The group consists of people with HAE and their siblings who are driven to make a lasting impact in the HAEA community.

In 2019, the HAEA’s Youth Leadership Council helped to establish the now widely used hashtag #BeyondHAE, which encourages HAE community members to highlight the incredible things that they do beyond their diagnosis. #BeyondHAE symbolizes not letting HAE hold you back from doing the things you love and pursuing your dreams.

If you would like information about how you can get involved in the HAEA’s Youth Leadership Council:

contact us today !


Ava, 15
My favorite part about participating in HAEA events is meeting new people. It is really nice to connect with people who are going through similar experiences, and the people we meet end up becoming our life long friends! #BeyondHAE I love to run, do sports, and spend time with my family and friends.


Sydney, 24
The HAEA means so much to me because they have changed the way I look at my HAE. I used to feel like my HAE was something I should hide but they empowered me to share my story and be proud of that part of my life. The HAEA is a family who has supported me and helped me grow in my own personal health and in my ability to give back and advocate for others. #BeyondHAE I am an artist! I love painting and creating new things. I even studied art in my undergraduate degree. You can find me enjoying spending time outside and making sketches for new painting ideas.


Noah, 16
Being a part of the Youth Leadership Council is extremely important to me. I value the work we do and hope that we can continue to change the HAE community for the better. We've been allowed to work with other people with HAE, and I'm extremely passionate about raising awareness and changing people's approach towards HAE. The Youth Leadership Council has allowed me to do just that and for that I'm grateful. #BeyondHAE I run track at a national level. I also do professional acting. I'm always looking for any opportunity to better myself and raise awareness!


Maddie, 16
My favorite part about being in the Youth Leadership Council is collaborating on new projects with other HAE youth who are some of the best people on Earth! #BeyondHAE I run cross country and play soccer.


Stephen, 17
Being in the HAEA Youth Leadership Council gives me a chance to advocate, not only for my family but for everyone. Whether it’s talking to congressmen or firefighters, I love advocating and meeting new people with hopes that one day there is a cure. #BeyondHAE I work on my family farm where I take care of cows and pigs and work with big machines. I throw shot put discus in the spring and win golf tournaments in the fall with my friends.


Sophia, 17
My advice to the HAEA youth community is to always stay strong even when you feel like everything is not going your way. Better times are coming and you are never alone!! You have all of us! #BeyondHAE I love drinking chocolate milkshakes, seeing my friends, and running.


Luke, 13
Being in the Youth Leadership Council means a lot to me because we have so many opportunities to raise awareness about HAE so other kids can learn to take control of their attacks and live a normal life doing the things they love to do. #BeyondHAE I like to play soccer, workout, and learn about reptiles.


Jack, 15
I think that it’s really important to connect with people who have HAE that are your age because it’s a lot easier to go through it with someone who understands. #BeyondHAE I am a basketball player.


Kobe, 18
My advice for others with HAE is to believe that you can do whatever you set your mind to. HAE does not have to be a dealbreaker, and you don't have to let it define you. #BeyondHAE I sing, write songs, play the piano, and perform.


Carlie, 18
My favorite part of being in the Youth Leadership Council has been our monthly meetings to connect, grow, and become creative together. I have learned so many leadership skills and have created many new friendships through this core group. It's like a family to me! #BeyondHAE I play the keyboard and sing at my local church, where I also am one of our Youth Leaders. I am also a full-time college student, am a Psychology Major (Pre-Counselor), and I am studying to become a Mental Health Military Counselor to help Veterans and their families.