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.