Being born with hereditary angioedema (HAE) means navigating unpredictable and painful swelling attacks. To give young patients a much-needed survival guide, the U.S. and international hereditary angioedema associations (HAEA/HAEi) have created a number of youth programs.
See the list below for resources that can help kids and teens understand HAE and learn to advocate for themselves. To help support these programs, learn about the HAEA’s end-of-year #Families4HAE fundraiser.
Organizers say the programs make a real difference in the lives of young people with HAE and their families. The #Families4HAE campaign supports educational resources, advocacy training, and community events that empower and help children, teens, and young adults affected by HAE live free from the limitations of their condition.
For kids ages four to 12, the Brady Club provides a secure, online space for children to learn about HAE from Brady the Bear. Through fun interactive activities and stories, kids will learn to understand their condition, feel empowered and discover healthy ways of coping.
#BeyondHAE Youth Produced Podcast
The HAEA community includes experts who can share their lived experience and acquired wisdom. The #BeyondHAE podcast features their stories on a channel created for patients at any stage of their journey with HAE.
Available on all major podcasting platforms, including Spotify, the ongoing series features a different youth host each episode to discuss activism, perseverance and support. The 40+ episodes cover:
- HAE diagnosis and management journey
- Preparing for back to school
- Using social media to advocate for HAE
- Anxiety, stress and growth with HAE
- HAE and dating
HAEi Youngsters LEAP Program
To develop the next generation of advocates, HAEi hosts an educational program called HAEi Leap to equip kids with the skills necessary to drive change in their community and beyond.
Over 14 weeks, students of the program engage with online modules and live sessions to learn how to conduct effective research, present ideas confidently, manage projects, write engaging copy and hone their multimedia skills.
Graduates receive a certificate of achievement, a letter of recommendation, as well as a monetary grant to help deliver on an advocacy project.
Interested youth between ages 16 and 25 years old can apply, and if accepted, are invited to attend an in-person seminar, marking the beginning of the program.
Pam King HAEA Scholarship Program
Prospective or currently enrolled college students living with HAE can apply to receive financial support through the Pam King HAEA Scholarship program. Since the program’s inception in 2017, hundreds of scholarships have been awarded.
"The Pam King HAEA Scholarship has lightened the financial burden of college and allowed me to attend the school of my dreams. It has also provided opportunities for me to get more involved in HAEA and meet other college students and children with hereditary angioedema. I am so thankful for their generosity and interest in getting more people involved and giving back to our special community," said Sydney from Texas Christian University.
Anyone with an HAE diagnosis in the United States is encouraged to apply. Learn more about the application details.