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, 19
Being a part of the HAEA community has played such a large role in my life. The Youth Leadership Council has allowed me to not only advocate for my younger sister, but for our community as a whole. The YLC has also allowed me to make connections with many of my friends who serve as my role models, and have impacted the way I look at life. #BeyondHAE I am a full time college student. I love to run, travel, and spend time with my family and friends!

Paige, 19
My favorite part about being involved in the HAEA Youth programs is the friendships that come along with it. As we all know HAE is uncommon and you don’t come across others with HAE everyday. These programs have helped me become more comfortable with my diagnosis by being able to be around individuals affected by HAE who are my own age and are going through similar experiences. The HAEA programs have allowed me to grow and become a well rounded advocate for the HAE community as well as bettering me as a human being. If anyone is thinking about joining the HAEA programs take the jump and join the family! My favorite thing to do #BeyondHAE is to travel the world with my family!

Noah, 20
My favorite part of being in the YLC and HAEA Youth Programs has been the connections and bonds I’ve created. I’ve had the pleasure of creating friendships that will last a lifetime! I also have a much stronger support system from all around the world and can also extend that support to others! #BeyondHAE I’m a junior at La Salle University, where I am an honors student, RA, and president of our Powerlifting Club.

Jojo, 15
My favorite parts of being in the YLC and HAEA Youth Programs are the friends that you make whose HAE-related experiences you can relate to, as well as the opportunities to travel and become more involved in the HAE community. #BeyondHAE I like to hang out with friends, bake, and read.

Caroline, 13
Being part of the HAEA community means knowing that people are going through the same thing as me. It means that I can talk about my HAE and they will know exactly what to say or exactly what I mean. I really like to be friends with people who have similar things happening in their lives. #BeyondHAE I like to play field hockey, bake, hang out with my friends, and go to the beach.

Maddie, 20
My favorite part of being in the YLC has been working on social media outreach! I love connecting with people from all across the country, and it is a really great way to reach people between in person events. #BeyondHAE I like to weight lift, embroider, and up-cycle clothing.

Zach, 22
My favorite thing about being a part of the YLC and the HAEA Youth is the fact that I can help kids with HAE not have the same struggles I did growing up. I remember being young and not knowing how to balance this debilitating condition alongside the stress of grades, sports, social life, and the million other things 13-year-old me found important. Being able to give that support, those answers, and guidance, has really fulfilled me and provided me a community like no other! I go #BeyondHAE by spending lots of time hanging out with friends, attending social and music events, as well as binge watching movies!

Kaylee, 18
The advice I would give to someone who wants to be involved is don’t be scared to talk. Sometimes it can be scary to meet new people, but people in the HAEA community are very sweet, supportive, and loving. Also don’t be afraid to ask any questions about HAE. #BeyondHAE I like to read and bake.

Kobe, 21
My favorite work that I’ve done with the YLC so far is the #BeyondHAE Youth Podcast. I’ve thoroughly enjoyed creating content for our podcast over the years, including hosting episodes and working behind the scenes on series creation. It’s wonderful to use a media form I’m passionate about as an advocacy tool. So many skills we have are transferable, and I encourage all HAE friends to get involved in advocacy in the way that best aligns with their interests. #BeyondHAE I sing, rap, and write songs. I also model and act professionally and have worked for brands such as Jansport and Meta. I independently produce my own podcast, KOBLIZZY, and I have an extensive history in live entertainment, performing both my own original work & as a part of theatrical productions.

Sophia, 20
When I was younger I did not know that so many other people were just like me! When I found out about the HAEA I felt seen and heard because so many others had gone through the same things as me. Through the HAEA community, I am able to advocate and share my story that can potentially help someone who is newly diagnosed not feel so alone. We have HAE but it doesn’t mean we cannot do anything we put our mind to. We are resilient and will keep moving forward to share our story. #BeyondHAE I like to spend time with my family and try new food.

Ella, 16
To me, being part of the HAEA YLC community means having the ability to connect with others and finding a way to come together to help however we can. I love how passionate everyone is about something that has affected them in their life, and how they can make a difference about it. #BeyondHAE i like to hangout with family and friends, and I also dive for my school.

Avery, 12
So far my favorite part of being in the YLC and HAEA Youth Program is how many friends I have made. I was so scared and so shy that I thought that no one would want to be my friend but that changed and I've made so many new and incredible friends. #BeyondHAE I like to play sports, play video games, and cook.

Jasmeen, 21
Being part of the HAEA (Hereditary Angioedema Association) community is more than a simple membership. It’s a community of friends – people tied together by a common experience who are learning to be strong in the face of your disease. It’s feeling empathy, sharing a laugh, and celebrating small victories against the overwhelming adversity of living with HAE. #BeyondHAE, I enjoy swimming and playing tennis competitively. These activities keep me in shape and give me a sense of accomplishment. I am also glad to have this time to pursue my degree at the University of Arizona where I am majoring in Rehabilitation Studies and services, a field of study I find relevant to my ambition to give someone the support I lacked throughout many years. I hope to help others through bad days, difficult moments, and challenges.

Skylar, 14
For me, being in the HAEA community is connecting with others who go through the same situations that I go through, having a community that I can go to. Also learning more about the blood disorder that some of my family members have. Another big thing that is meaningful to me is reaching out to the community to raise HAE awareness. #BeyondHAE I like to sing on the worship team at my church, and to play tennis.

Luke, 17
My favorite part of being in the YLC and HAE Youth Programs is the people I’ve met along the way. Every time there is an event, I get to better connect to the people involved and create strong relationships. Everyone treats me like family and I couldn’t ask for anything more. #BeyondHAE I like to stay active with soccer and going to the gym, as well as working hard in school.

Ally, 26
I would say there's no better way to get involved in our community than starting your youth advocacy journey here! The US HAEA has given us access to countless means of youth involvement and each one is amazing. Even with zero experience you can do amazing things! From podcasts, to our internship, to just telling your story- everything is helpful, and you'll be amazing! #BeyondHAE I have a passion for my career in Special Education as well as cooking, reading, and exploring nature!

Kati, 13
Being part of the HAEA community means to be a role model for the younger kids, help out in events, and share my story and experiences with younger kids so they know that they can live a “normal” life just like me. #BeyondHAE I like to play volleyball, hang out with friends and family, I like to swim and love math.

Carlie, 21
I would tell other young people who are thinking about getting involved in the HAEA youth programs to just do it! Getting nervous is normal, but don't let that fear stop you from diving in. You have so much to offer and a unique purpose! #BeyondHAE I love to play music and sing.

Victoria, 16
To me, being a part of the HAEA community means I am a part of spreading awareness for our small community. Joining a team that assists in growing support systems for the HAEA is something that means a lot to me being a patient and caregiver to my mom. #BeyondHAE I play volleyball for my school, I love capturing beauty through photography, learning new perspectives through reading books, and expressing my creativity through art.

Cassidy, 16
So far my favorite part of being part of the YLC is getting to meet so many people my age that understand what I’ve been through with my HAE. #BeyondHAE I play softball and volleyball and I am in f the Girl Scouts. I also love to read and sing.

Kiarra, 18
Being a part of the HAEA community has been an amazing experience for my family and I. Until we attended our first HAEA event we had never met another person with HAE.Being around others who understand the challenges and hardships we face as rare disease patients has been very helpful, and meeting others who understand the hardships has made life seem less difficult. #BeyondHAE I like to travel, read, and participate in Future Farmers of America (FFA). I raise and show livestock through FFA and also compete at competitions.