PATIENTS RISING ADVOCACY TRAINING

LEAD: Legislative Education & Advocate Development

Understand the System. Then Engage Effectively.

LEAD is Patients Rising’ advocacy training program for patients and caregivers who want to better understand healthcare policy and engage constructively in shaping it.

Through structured education, participants learn how healthcare policy works, how decisions are made, and how patients can participate thoughtfully in those conversations.

Secure Your Spot

Patients Rising Legislative Advocacy Masterclass

WHY LEAD EXISTS

Turning Experience into Effective Advocacy

Patients and caregivers often have firsthand experience navigating complex healthcare systems, but little guidance on how policy decisions are made or where patient voices can contribute.

LEAD helps bridge that gap.

The program provides a clear introduction to healthcare policy and advocacy, helping participants translate personal healthcare experiences into informed, credible engagement.

WHO LEAD IS FOR

Built for Patients and Caregivers

LEAD is designed for patients and caregivers who want to understand how healthcare policy works and how to engage thoughtfully in shaping it.

Participants may be living with chronic illness, caring for a loved one, or navigating complicated treatment decisions. What they share is a willingness to learn, prepare, and engage constructively in policy conversations.

WHAT PARTICIPANTS LEARN

Practical Advocacy Knowledge

LEAD participants gain a working understanding of how healthcare policy develops and where patients can have meaningful influence.

Topics include:

• How healthcare policy is developed
• Understanding federal and state policy structures
• Communicating clearly with legislators and staff
• Translating personal experience into credible advocacy
• Identifying constructive opportunities to engage

LEARNING TOGETHER

Communities Learning Advocacy Together

LEAD cohorts bring together patients and caregivers who want to learn advocacy together while building knowledge, confidence, and connection.

Each cohort is organized around a shared community or disease area, allowing participants to learn alongside others navigating similar healthcare challenges.

Explore the current LEAD cohorts below.

MULTIPLE MYELOMA

International Myeloma Foundation (IMF)

Advocacy training cohort developed in partnership with the International Myeloma Foundation, helping patients and caregivers better understand healthcare policy and engage constructively in shaping it.

Explore Cohort

PRADER-WILLI SYNDROME

Prader-Willi Syndrome Association | USA

Developed in partnership with the Prader-Willi Syndrome Association | USA, this LEAD cohort helps patients, caregivers, and families better understand healthcare policy and engage constructively in advocacy.

Explore Cohort

SCLERODERMA

Scleroderma Foundation Affiliates

Developed in partnership with several Scleroderma Foundation affiliate chapters including: Greater Chicago, Greater Washington D.C., and California, this LEAD cohort helps patients and caregivers learn advocacy and engage effectively in healthcare policy.

Explore Cohort

Learning from People Who Know the System

Instruction is practical and applied — focused on how systems actually function and how advocates can engage effectively within them. Participants learn from experts who have worked inside legislative, regulatory, and policy-making environments, and who understand what it takes to be credible in those settings.

Module 1: Congress 101 | Foundations in Legislative Advocacy

Module 2: Step Therapy | Understand step therapy and how it impacts patient care

Module 3: PBMs & Co-Pay Accumulators | Learn the complex pharmaceutical pricing system

Module 4: Price Transparency | Transparency initiatives and real-world navigation

Module 5: Value-Based Care | How "value" and "success" are defined and measured in the healthcare system

Module 6: Raise Your Voice | How advocates can extend their influence through strategic use of formal government processes and media engagement

Module 7: Understanding Value Assessment Frameworks

Module 8: Advocacy on the Hill | Learn the practical, professional aspects of Hill advocacy while maintaining a focus on the personal storytelling

Module 9: FDA Advisory Boards | Understand FDA Advisory Board Structure & Purpose, and discover patient engagement opportunities and how to deliver effective testimony

Module 10: Drug Utilization Review Boards | Learn the function and composition of DUR Boards and effective advocacy tactics for engaging them

Module 11: Prescription Drug Advisory Boards & Upper Payment Limits |Understand the origins and structure and the impacts both have on market and innovation

Module 12: Storytelling | Learn how to craft your unique narrative

“By human’s innate nature, everyone wants to help but they don’t necessarily know how, so sharing our story through advocacy has been a liberating experience as we see results of our efforts in moving the needle forward in getting approvals and support from the community and government.”

– Alpa

Patient Advocate

“My motivation is to empower others to be able to live their lives and thrive. The chronic illness and disability community continues to inspire and remind me that representation matters as does education and advocacy! Everyone matters and deserves a chance to live to their fullest potential.”

– Skyler

Patient Advocate

Frequently Asked Questions

LEAD is offered at no cost to participants.

Because the program requires time, preparation, and thoughtful participation, we ask participants to approach the course with seriousness and follow-through.

LEAD is designed for patients and caregivers who are ready to engage thoughtfully in healthcare policy and advocacy.

Participants range from those new to policy to more experienced advocates, but all share a willingness to learn, prepare, and engage responsibly.

LEAD is a self-paced program consisting of 12 modules that include video instruction, readings, and applied exercises.

Most participants complete the course over 6–12 weeks, though it can be completed more quickly depending on individual schedules and level of engagement.

Yes. LEAD includes optional live sessions scheduled throughout the course.

These sessions provide additional context, discussion, and Q&A. All sessions are recorded and available to participants.

No prior policy experience is required.

LEAD focuses on building critical thinking, policy literacy, and effective communication. Participants bring firsthand perspective, and the program provides structure, context, and practical guidance for engaging policy systems.

Ready to Engage in Healthcare Policy?

LEAD provides the education, structure, and practical guidance needed to engage thoughtfully and effectively in healthcare policy. If you’re ready to learn how the system works and how to participate in shaping it, LEAD is designed for you.

Secure Your Spot