Moving away from home to go to college can be a big adjustment for everyone, however, it can be a particularly big move for someone with HAE. Tune in to this month's #BeyondHAE podcast to hear how Kobe adjusted to college life away from home. Part of his new responsibilities involved receiving, managing, and taking his medication while at college. This episode is one you won't want to miss if you're planning to move away from home or make a major life transition. This youth produced podcast...

This month's episode of the #BeyondHAE podcast is hosted by Karissa who shares her personal HAE story of perseverance and hope. Karissa experienced years of mis-diagnosis and had moments when her hope for a better future was dissipating, but Karissa never gave up. She pushed forward, and today continues to reach her goals and pursue her dreams. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving...

We are excited to welcome members from the HAE International Youngsters community as the hosts for this episode. Nanna, Erini, Isabel, and Nevena represent countries from all corners of the world as they talk about what it means to them to live #BeyondHAE. As you listen to this episode we ask that you reflect on your own story and what it means to you to live your life #BeyondHAE. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a...

Episode 29 is hosted by Ally whose younger brother, Jack has HAE. In this episode, Ally talks about how her and her family support Jack and his HAE by coming together to host fun events and activities. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit,...

Episode 28 is hosted by Ava who welcomes her mom, Sherry to talk about what it's like to care for and support Ava's younger sister Lillian who has HAE. There have been some challenging times, but together they have been there to support Lillian through her diagnosis, treatments, and management of her HAE. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and...

Many people with HAE experience anxiety. Episode 26 is hosted by Carlie who talks about managing and understanding anxiety while living with HAE, as well as letting listeners know they aren't alone in their struggles. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network,...

Episode 26 is hosted by Sophie and her mom, Melanie. This episode is about learning to manage changes in life while managing HAE. Life changes are inevitable and learning effective coping strategies is important to ensuring that you are able to navigate those changes while still effectively managing your HAE. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and...

Episode 25 is hosted by Sophia who lives in Connecticut. Beyond her HAE, Sophia runs track and is passionate about improving her times and advancing in her sport. She talks about how modern HAE therapies and the successful management of her disease has resulted in her having the best year yet in track. Sophia is an incredible example of a young women who has not let her HAE hold her back from excelling in the sport she loves! This youth produced podcast is brought to you thanks to the...

Episode 24 is hosted by ReyJeanne and her friends from college. They talk about supporting ReyJeanne through some of the challenges that she experienced in college. From learning how to give emergency medication, supporting you during stressful times, and knowing your emergency plan, friends can play a big part in supporting you on your HAE journey. Don't miss this amazing episode that provides a glimpse into what it's like to be in college while managing your HAE. This youth produced...

Episode 23 is by Luke. This episode is all about Luke's HAE journey. From diagnosis, getting access to medication, insurance denials to getting involved in the HAEA youth programs and making life long friendships. Now Luke is participating in a clinical trial, paving the way for advances in medication options for other people with HAE. Luke's story is all about overcoming challenges to achieve his goal of living life #BeyondHAE.

Episode 22 is hosted by Jack from New Jersey. Jack talks about his many trips to the ER and shares some stories about his experiences there. ER trips can be stressful and emotionally draining, but advocating for yourself and your needs is an important lesson that can reduce unnecessary procedures and wait times. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient...

Noah is an athlete and in this episode, he talks about what he does to make sure that HAE doesn't stop him from participating in the sports he loves. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.

This episode is all about telling people in your life about your HAE. Hear from members of the HAEA Youth Leadership Council as they discuss everything from telling friends about HAE to coaches and teachers. Sometimes it's hard for our peers to understand, but other times, our friends surprise us with how supportive they can be. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of...

Episode 19 is hosted by 10 year old Ava from California. Ava talks about the impact that stress has on her HAE attacks. She shares some strategies that she's learned over the years to cope with stress. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit,...

Episode 18 is hosted by Gabriela from California. Gabriela shares her personal HAE story and talks about how art has helped her get through difficult times. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.

This episode is hosted by Youth Leadership Council member and HAEA Social Media Intern, Maddie. In this episode, Maddie shares her HAE journey, from her diagnosis and many hospital visits, to becoming part of the HAEA Youth community and advocating for the HAE community on Capitol Hill. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To...

This episode is hosted by Kobe from Georgia. Kobe asks the question, what does it mean to be normal? As a young person with a chronic disease, many of us understand that we are a little different from our peers. As Kobe describes in this episode, being different is actually more normal than many of us realize. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and...

This special BONUS episode of the #BeyondHAE podcast is a roundtable discussion with the HAEA Youth Leadership Council. Hear from members of the HAEA Youth community as they share some of their back to school tips and tricks. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support...

This episode of the #BeyondHAE Podcast hosted by Gabriela who talks about why it is important to speak up for yourself at school. While it’s not always easy to talk to the administration at school about your HAE, it’s important. If you'd like more information about 504 plans, here is the link that is referenced in Gabriela's episode: https://www.understood.org/en/school-learning/special-services/504-plan/7-steps-to-getting-a-50 4-plan-for-your-child This youth produced podcast is brought to...

Episode 11 of the #BeyondHAE podcast is hosted by 16 year old Sophia, from Connecticut. This episode is all about Sophia’s road to independence and control over her HAE attacks. She talks about how self-administration has contributed to feeling confident and managed, and how finding the right medication has impacted her HAE story. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs...

Episode 12 is hosted by 18 year old Kyleigh, from Texas. Kyleigh’s episode is all about travel tips to make traveling smooth and easy for people with HAE.. Although many of us might not be traveling at this time, it’s important to be prepared when you leave home for any amount of time. Tune into Kyleigh’s episode to learn more about how you can prepare if you must travel. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient...

Episode 10 is hosted by Carlie from Louisiana. In this episode Carlie interviews her mom Mary, and they talk about everything from how they support each other to navigating relationships and friendships. Carlie and Mary provide some tips to support young people in relationship building with peers.  This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver...

BONUS Episode! The HAEA Youth and the HAEi Youngsters have come together to collaborate on this special episode of the #BeyondHAE Podcast. This roundtable discussion is all about the impact that COVID-19 (Coronavirus) has had on the lives of young people with HAE around the world. Hear from young adults living in South Africa, Greece, and the US about how their lives have been impacted by this unprecedented international crisis. This youth produced podcast is brought to you thanks to the...

Episode 9 is hosted by Jasmeen, from New Mexico. This episode is all about navigating friendships. Jasmeen talks about her experience telling her peers about HAE and how sometimes this experience unveiled false friends. But there are lessons to learn with every experience and Jasmeen shares how this experience has taught her important lessons along the way. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy...

Episode 8 of the #BeyondHAE Podcast is hosted by 14-year-old Jack from New Jersey. Jack’s HAE attacks have always been pretty manageable until he experienced his first throat swell and began to feel overwhelming anxiety as a result. Listen to May’s #BeyondHAE podcast episode to hear Jack’s story and how he learned to overcome his anxiety. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the...