Nearly all non-profit organizations participate in advocacy in some capacity – whether it is raising awareness for a specific disease, promoting research, or supporting policy changes. Regardless of what is being advocated for, there are certain strategies and best practices that can help you or your organization achieve success. Below are some educational resources that provide core advocacy principals and techniques that can help individuals and organizations.
The Rare Learning Center
- What is a Rare Disease?
- What is RareAction?
- Why should I be an advocate?
- How to Meet with Your Legislator
- The Legislative Process
- What You Need (Legislative Visit Materials)
- State Government vs. Federal Government
- Public Speaking
- Host a Community Event
- How to Create a Student Club
- Engaging with the Media
- Interactive Activities
A rare disease is any disease, disorder, illness or condition affecting fewer than 200,000 people in the United States.
Toolkit #1-The Rare Action Network is the nation’s leading advocacy network working to improve the lives of the 30 million Americans impacted by rare disease. While working on both the national and state level, RAN filters information to help address issues of national concern and engage RAN advocates to take action through policy, awareness and educational initiatives in their state and local communities.
Toolkit #4-The state legislative process is very similar to the federal process, but perhaps with a few less steps. It is important to remember that the process does vary from state to state and just because a bill is sponsored, supported, and signed in one state does not mean that it will be put into effect in other states.
Toolkit #6-The U.S. Constitution divides power between states and the federal government. Learn to understand the differences between the U.S. federal government and the individual state and local governments.
Toolkit #9-Anyone can be a rare disease advocate, including students! Learn more about how your college university can get involved in the rare disease community by starting a club devoted to rare diseases.