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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

A rare disease is any disease, disorder, illness or condition affecting fewer than 200,000 people in the United States.

Toolkit #1-The RareAction 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 #2-These resources will help you to understand the definition of an advocate and the importance of why you should become your own rare disease advocate.

Toolkit #3-In this training you will learn how to prepare yourself to meet with your legislator and what to expect during your meeting.

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 #5-These resources will help you to learn how to develop your messaging, create talking points and create leave behind materials for your meetings.

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 #7-Learn how to write an effective speech and powerful story while understanding how to deliver it to make an impact.

Toolkit #8-There are many ways to advocate and raise awareness for rare diseases. Here are some suggestions for best practices and ideas on hosting an event in your own community.

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.

Toolkit #10-Advocate and raise awareness for rare diseases by making your message loud and clear! Share your story with local media outlets to help spread the word.

Download one of the below coloring pages and send us your child’s completed page(s) or their own original art and it could be used in future NORD campaigns and marketing materials! Be sure to include your child’s first name and state you reside in! Email [email protected]

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