Youth Legislative Advocates
Youth Legislative Advocacy Training
What is HAE Legislative Advocacy?
The HAEA Youth Legislative Advocacy Program is a six part training program that encourages young people to be active players in shaping the perspectives of elected representatives in both the House and Senate. By participating in HAEA Youth Advocacy initiatives, we can amplify our collective voices to ensure that issues important to HAE patients are heard in the states and federal governments.

Goals of the Youth Advocacy Program:
  • To build the next generation of HAE community leaders
  • To improve the advocacy skills of our HAE youth through practical and experiential trainings
  • To underscore the vital role of youth and young adults in HAE advocacy before the U.S. Congress and at the state level
  • To have HAE youth advocates representing each US state
  • To act decisively on behalf of the HAE patient and caregiver community

Some of the legislative advocacy training activities may require discussion with your family members. Feel free to reach out to a family member to provide additional insight if you are unsure about how some of the issues impact your family.

*Once you have submitted your answers for all six activities we will send you a Certificate of Completion for the HAEA Youth Legislative Advocacy Training Program.*




Legislative Advocacy Training Activity 1: Your HAE Story
Have you ever taken the time to write about your personal HAE story? For this activity, you will be asked to think about and draft your personal HAE story. Click here to proceed with Activity 1.



Legislative Advocacy Training Activity 2: Learn about your House and Senate Representatives
An important part of legislative advocacy is doing research to learn about your representatives and how to communicate with them. You'll need to do some research and find out who they are, how you can contact them, and what their position is on matters that are important to the HAE community.

This activity is hosted by longtime HAEA Youth Advocate, Kelsie, who will guide you through each step in a short YouTube Video. Use the links below to complete activity 2.

Instructions: Learn about your House and Senate Representatives

Click here to complete Activity 2.



Legislative Advocacy Training Activity 3: Understanding the Issues
Another critical aspect of legislative advocacy is educating yourself on the issues that face your community, and learning about ways your elected officials can support your community on those issues.
We will use this lesson to guide you through the process of learning about some current bills and issues that are impacting our community. These bills and issues are all non-partisan, meaning they are not of Republican or Democrat interests, they are in the interests of all rare disease patients. Use the links below to complete Activity 3.

Instructions: Understanding the Issues

Click here to complete Activity 3.



Legislative Advocacy Training Activity 4: Relating to the Issues
Now that you have learned about some of the pressing issues facing the HAE community, it's important to think about why these issues are important and how they relate to you and your experiences. This exercise will ask you to think critically about your personal experiences and the issues you learned about last week. Use the links below to complete Activity 4.

Instructions: Relating to the Issues

Click here to complete Activity 4.



Legislative Advocacy Training Activity 5: Select Your Cause
Was there a particular issue that you learned about in the previous weeks that stood out to you as impactful in your life? What was that issue? As you move forward as an HAE Advocate it is important to feel passionate about the issues that you are advocating for. Think about the issues that you've already researched and select one that you'd like to focus on. Use the links below to complete Activity 5.

Instructions: Select Your Cause

Click here to complete activity 5.



Legislative Advocacy Training Activity 6: Crafting an Effective Elevator Pitch
Now that you've done your research and reflected on the issues affecting the HAE community, you can begin to craft an Elevator Pitch. An Elevator Pitch is a clear, brief message about you or your cause, to be shared quickly and effectively with people who don't know you. An Elevator Pitch must be short, specific, and memorable. It is important to have your elevator pitch rehearsed and ready because you never know when you'll have an opportunity to use it! Use the links below to complete Activity 6.

Instructions: Crafting an Effective Elevator Pitch

Click here to complete activity 6