Welcome to the Road to Reform Roadmap: For Policymakers a comprehensive, structured course designed to guide you through the intricacies of advocacy, from foundational knowledge to advanced leadership!
This program breaks down the advocacy process into manageable steps, offering tailored lessons for various roles, including patients, caregivers, healthcare professionals, and allies. Each section of the course is designed to meet you where you are, providing a personalized learning experience that progresses at your own pace. Whether you’re just starting out or looking to deepen your advocacy efforts, the Road to Reform Roadmap equips you with the essential tools, resources, and knowledge needed to make a significant impact.
The course is divided into four tiers, with Tiers 1 and 2 under the ‘Rise’ section and Tiers 3 and 4 under the ‘Rally’ section. The ‘Rise’ section focuses on self-advocacy and community engagement, helping you build a strong foundation in personal and local advocacy. The ‘Rally’ section delves into legislative and systemic advocacy, guiding you through the processes involved in influencing healthcare policies and leading larger reform initiatives. Each tier includes detailed lessons and practical activities, pointing you to relevant pages on our website for further resources and action steps. This structured approach ensures you can confidently navigate the advocacy landscape and utilize the vast resources available on our site to support your journey.
Are you ready to take the next steps in your advocacy journey? Let’s get started!
Curriculum
- 6 Sections
- 51 Lessons
- Lifetime
Expand all sectionsCollapse all sections
- IntroductionIn this section, we provide an overview of Rise and Rally, our mission, and the goals of the Road to Reform program. We explain how the roadmap is designed to guide you through different tiers of advocacy, tailored to your specific needs and roles. Expect to learn about the structure of the program, the support you will receive, and the outcomes you can achieve as you progress through the tiers.6
- RISE Tier 1: Self-Advocacy and EducationPatients are introduced to advocacy concepts, learning to navigate healthcare systems and communicate their needs effectively. This tier empowers them with basic advocacy skills and resources.11
- 2.1Tier 1 Introduction
- 2.2LESSON 1: Introduction to Advocacy
- 2.3LESSON 2: Get Connected To Community
- 2.4LESSON 3: Understanding & Defining Chronic, Complex & Rare Diseases
- 2.5LESSON 4: Understanding & Defining Healthcare Reform
- 2.6LESSON 5: Get Familiar With Commonly Referenced Health Terms & Political Terminology
- 2.7LESSON 6: Get Connected To Free Resources & Downloads
- 2.8LESSON 7: Read Stories From Other Advocates
- 2.9LESSON 8: Learn More & Stay Informed Via Our Free Media Content
- 2.10LESSON 9: All Tier Level Involvement
- 2.11Tier 1 Checklist10 Questions
- RISE Tier 2: Community Advocacy and AwarenessPatients share their experiences and connect with support networks, fostering a sense of community. They participate in educational events to deepen their understanding and advocacy efforts.12
- 3.1Tier 2 Introduction
- 3.2LESSON 1: Connect To Community For Voting
- 3.3LESSON 2: Using Social Media for Advocacy
- 3.4LESSON 3: Participating in Awareness Days & Months
- 3.5LESSON 4: Supporting Petitions
- 3.6LESSON 5: Sharing Your Story
- 3.7LESSON 6: Hosting a Fundraiser
- 3.8LESSON 7: Support Proclamations
- 3.9LESSON 8: Support Monument Lightings
- 3.10LESSON 9: Engaging with Mainstream Media
- 3.11LESSON 10: All Tier Level Involvement
- 3.12Tier 2 Checklist11 Questions
- RALLY Tier 3: Legislative AdvocacyPatients engage in legislative advocacy, learning to influence policy changes and communicate with lawmakers. They participate in campaigns and efforts to improve healthcare policies.14
- 4.1Tier 3 Introduction
- 4.2LESSON 1: Understanding Policy Issues
- 4.3LESSON 2: Supporting Our Cause Through the Local Legislative Process
- 4.4LESSON 3: Supporting Our Cause Through the State Legislative Process
- 4.5LESSON 4: Supporting Our Cause Through the Federal Legislative Process
- 4.6LESSON 5: Connecting With Your Constituents In Our Communities
- 4.7LESSON 6: Make Contact With Your Constituents In Your Community
- 4.8LESSON 7: Understanding Policy Maps
- 4.9LESSON 8: Utilizing One-Pagers From Constituents
- 4.10LESSON 9: Support Your Constituents In Creating Bills
- 4.11LESSON 10: Searching & Tracking Legislation
- 4.12LESSON 11: Joining & Engaging with the Rare Disease Congressional Caucus
- 4.13LESSON 12: All Tier Level Involvement
- 4.14Tier 3 Checklist13 Questions
- RALLY Tier 4: Advanced Advocacy and LeadershipPatients take on leadership roles, honing advanced advocacy skills. They contribute to systemic change efforts, including medical education reform and healthcare system improvements.13
- 5.1Tier 4 Introduction
- 5.2LESSON 1: Deepen Your Involvement Through Volunteering
- 5.3LESSON 2: Become an Ambassador
- 5.4LESSON 3: Engage in Events
- 5.5LESSON 4: Fundraise for Advocacy
- 5.6LESSON 5: Represent Rise & Rally Through Apparel and Social Media
- 5.7LESSON 6: Spread Awareness and Building Support Through Mainstream Media
- 5.8LESSON 7: Help Get Rise & Rally Booked to Come Speak and Present
- 5.9LESSON 8: Help Us Find Organizations, Groups, Companies, and People to Partner With
- 5.10LESSON 9: Join the Board of Directors
- 5.11LESSON 10: All Tier Level Involvement
- 5.12Tier 4 Checklist11 Questions
- 5.13Congratulations on Completing the Road to Reform Roadmap!
- Continued Advocacy0
