LEAD COHORT

Advocacy Training with the Prader-Willi Syndrome Association | USA

Learn Advocacy. Understand Policy. Engage Effectively.

This LEAD cohort is developed in partnership with the Prader-Willi Syndrome Association | USA (PWSA | USA) and brings together families, caregivers, and individuals in the Prader-Willi syndrome community who want to better understand healthcare policy and engage constructively in shaping it.

Participants learn how healthcare decisions are made and how patient and caregiver voices can contribute meaningfully to policy conversations that affect access to care and support services.

Join the Prader-Willi LEAD Cohort

COMMUNITY PARTNERSHIP

Built in Partnership with PWSA | USA

Patients Rising and the Prader-Willi Syndrome Association | USA share a commitment to empowering families and caregivers with the knowledge needed to navigate healthcare systems and participate thoughtfully in policy discussions.

Through this partnership, the LEAD program provides structured advocacy education designed to support members of the Prader-Willi syndrome community who want to better understand the policy landscape affecting treatment, services, and long-term care.

Participants gain tools to engage constructively with policymakers and to advocate for improved access and support.

WHAT YOU WILL LEARN

Advocacy Skills That Build Confidence

Participants in this cohort will develop practical knowledge and skills that support thoughtful advocacy.

Topics include:

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

The goal is to help participants feel informed, prepared, and confident when engaging in policy discussions.

WHO THIS COHORT IS FOR

Families and Caregivers in the PWS Community

This LEAD cohort is designed for members of the Prader-Willi syndrome community who want to better understand the healthcare system and the policy decisions that shape access to treatment, services, and care.

Participants may be:

• parents or caregivers of individuals with PWS
• adults living with Prader-Willi syndrome
• advocates within the PWS community
• individuals interested in learning how patient advocacy works

No previous policy experience is required — only curiosity and a willingness to learn.

COMMUNITY STORIES

Stories from the PWS Community

Advocacy often begins with personal experience.

These stories highlight the journeys that lead families and caregivers in the Prader-Willi syndrome community to learn advocacy and engage more deeply in healthcare policy.

Four Cancer Journeys — And Fourteen Years of Watchful Waiting

““Why did I have to smolder with MGUS for 14 years once the M-spike was found?””

– Bonnie

Multiple Myeloma Patient

Read Bonnie's Story

When Insurance Denies Treatment, Patients Must Advocate

““No one is more invested in your health than you are.””

– Ann

Multiple Myeloma Patient

Read Ann's Story

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

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

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