--- title: "LEAD Cohort: International Myeloma Fondation" description: Patients and caregivers in the scleroderma community can learn advocacy and healthcare policy through the Patients Rising LEAD training cohort. image: https://www.patientlearningcenter.org/hubfs/Amy%20Gietzen%20-%20Featured.png --- [![Patients Rising](https://www.patientlearningcenter.org/hs-fs/hubfs/raw_assets/public/PatientsRising-u4m/templates/images/patients_rising_logo.png?width=120&height=900&name=patients_rising_logo.png "Patients Rising")](https://www.patientlearningcenter.org/) - Policy Center - - [Policy Framework ](https://www.patientsrising.org/policy) - [Affordability ](https://www.patientsrising.org/policy/affordability) - [Accountability ](https://www.patientsrising.org/policy/accountability) - [Innovation ](https://www.patientsrising.org/policy/innovation) - [Federal Healthcare Policy ](https://www.patientsrising.org/policy/federal) - [Learning Center ](https://www.patientlearningcenter.org/) - - [LEAD Education ](https://www.patientlearningcenter.org/lead) - [Our Community ](https://www.patientsrising.org/our-community) - [Patient Senate ](https://www.patientsrising.org/patient-senate) - Insights - - [All Posts ](https://www.patientsrising.org/advocacy-updates) - [PR Magazine ](https://www.patientsrising.org/pr-magazine) - [Patient Stories ](https://www.patientsrising.org/advocacy-updates/tag/patient-stories) - [Medical Bankruptcy in America ](https://www.patientsrising.org/medical-bankruptcy-america) - [State of the Patient Podcast ](https://www.patientsrising.org/state-of-the-patient-podcast) - Get Involved - - [Share Your Story ](https://www.patientsrising.org/storyshare) - [Become an Advocate ](https://www.patientsrising.org/become-an-advocate) - [Join the Patient Senate ](https://www.patientsrising.org/patient-senate) - [Join Our Community ](https://www.patientsrising.org/community) - [Events ](https://www.patientsrising.org/events) - - [State of the Patient Summit & Rise Awards ](https://www.patientsrising.org/events/summit-and-rise-awards) - [Advocacy Fly-ins ](https://www.patientsrising.org/patients-rising-fly-in) - [Virtual Lunch n' Learns ](https://www.patientsrising.org/events) - Virtual Town Halls - About Us - - [Our Mission ](https://www.patientsrising.org/about-patients-rising) - [Our Principles ](https://www.patientsrising.org/patients-rising-principles) - [Our Team ](https://www.patientsrising.org/team) - [Our Board of Directors ](https://www.patientsrising.org/board) - [Our Advisory Councils ](https://www.patientsrising.org/advisory-council) - [Partners and Coalitions ](https://www.patientsrising.org/partners) - Corporate Partnerships - [Funding & Financial Reports ](https://www.patientsrising.org/financial-transparency) [Donate ](https://patientsrising.org/?form=support-patientsrising) This is a search field with an auto-suggest feature attached. - There are no suggestions because the search field is empty. THE PATIENT LEARNING CENTER # Advocacy Training for the Scleroderma Community #### Learn Advocacy. Understand Policy. Engage Effectively. This LEAD cohort is developed in partnership with **Scleroderma Foundation** affiliates in [Washington, D.C](https://sclerodermadmv.org/)., [Chicago](https://www.stopscleroderma.org/), and [California](https://myscleroderma.org/) we bring together patients and caregivers who want to better understand healthcare policy and engage constructively in shaping it. Participants learn how healthcare decisions are made and how patient voices can contribute meaningfully to policy conversations affecting the scleroderma community.   Connect and Learn More ![Amy Gietzen LEAD Leader-1](https://www.patientlearningcenter.org/hubfs/Amy%20Gietzen%20LEAD%20Leader-1.png) ![alt-content-22](https://www.patientlearningcenter.org/hubfs/PatientsRising-u4m/images/Alt%20Content%20Images/alt-content-22.webp) PARTNERSHIP ## Built with the Scleroderma Community Patients Rising developed this LEAD cohort in partnership with **Scleroderma Foundation** affiliates in **[Washington, D.C](https://sclerodermadmv.org/).**, **[Chicago](https://www.stopscleroderma.org/)**, and [**California**](https://myscleroderma.org/), creating a space for patients and caregivers to learn advocacy together. Living with scleroderma often means navigating complex healthcare systems, treatment challenges, and insurance barriers. This cohort helps participants better understand the policy environment that shapes those experiences. Through structured learning and peer discussion, participants gain the knowledge and confidence needed to engage thoughtfully in healthcare policy conversations. ![Scleroderma Alt Content](https://www.patientlearningcenter.org/hubfs/Scleroderma%20Alt%20Content.png) 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. ![2025 Fly In - Scleroderma Community](https://www.patientlearningcenter.org/hubfs/2025%20Fly%20In%20-%20Scleroderma%20Community.png) WHO THIS COHORT IS FOR ## Patients and Caregivers Living with Scleroderma This LEAD cohort is designed for members of the **scleroderma community** who want to better understand the healthcare system and the policy decisions that shape access to treatment and care. Participants may be: • living with scleroderma • caring for someone with scleroderma • active in the scleroderma community • interested in learning how patient advocacy works No prior policy experience is required — only curiosity and a willingness to learn. COMMUNITY STORIES ## Stories from the Scleroderma Community Advocacy often begins with personal experience. These stories highlight the journeys that lead patients and caregivers in the scleroderma community to learn advocacy and engage more deeply in healthcare policy. Button ![2026- Bonnie and Dan Slider3](https://www.patientlearningcenter.org/hubfs/2026-%20Bonnie%20and%20Dan%20Slider3.png) ### 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 ](https://www.patientsrising.org/advocacy-updates/fourteen-years-of-watching-and-waiting) ![Ann - Myeloma Slider](https://www.patientlearningcenter.org/hubfs/Ann%20-%20Myeloma%20Slider.png) ### 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 ](https://www.patientsrising.org/advocacy-updates/anns-story) MULTIPLE MYELOMA ### International Myeloma Foundation (IMF) Advocacy training cohort developed in partnership with the **[International Myeloma Foundation](https://www.myeloma.org/)**, helping patients and caregivers better understand healthcare policy and engage constructively in shaping it. [Explore Cohort ](https://www.patientlearningcenter.org/lead/cohorts/myeloma) PRADER-WILLI SYNDROME ### Prader-Willi Syndrome Association | USA Developed in partnership with the [**Prader-Willi Syndrome Association | USA**](https://www.pwsausa.org/), this LEAD cohort helps patients, caregivers, and families better understand healthcare policy and engage constructively in advocacy. [Explore Cohort ](https://www.patientlearningcenter.org/lead/cohorts/prader-willi) ## 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 Is there a cost to participate? **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. Who is LEAD designed for? **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. What is the time commitment? **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. Are there live sessions? **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. Do I need a background in policy or government? **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. 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