The HAEA Youth Advocacy Program 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.

Use this form to document and save and submit your answers for the activities. You will receive an email with all your answers when you submit the form.

Note: 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.

 

 

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.

Visit the following websites to learn about some of the current issues that the HAEA is fighting for. 

For each issue, answer 3 important questions:

1. What need/issue is being addressed?

2. What is the proposed solution?

3. What is the intended outcome? 

 

United for Charitable Assistance: http://www.unitedforcharitableassistance.org/the-issue#the-issue-1

Safe Step Act: https://wenstrup.house.gov/updates/documentsingle.aspx?DocumentID=403690

National Institute of Health and Rare Disease Program Funding: https://www.nih.gov/about-nih/what-we-do/impact-nih-research

Visit the National Institute of Health (NIH), and in the search, type in ‘Hereditary Angioedema’ to find information about how the NIH supports the HAE community. Every year the HAEA requests support for additional funding from the NIH, which is a government organization that supports critical medical research. This federally-funded research often serves as a catalyst for medical breakthroughs and scientific advancements into innovative therapies and cutting-edge diagnostic tools. The bulk of NIH research is not conducted by the federal government. Rather, academic research centers across the country (UC San Diego, Harvard, Northwestern, UT Southwestern, etc.) compete for funds with meritorious research projects.