We believe that every voice matters and that our community is the key to changing public policy. Thank you to all rare disease advocates who make their voices heard year-round and continue to advance policies that benefit the rare disease community.
The advocacy tools on this page are designed to help rare disease patients, parents, caregivers, and others to make their voices heard. If you would like more information about a topic or have tools to share with the community, please contact advocacy@rareadvocates.org.
RARE Advocates Webinars
Once a month, RARE Advocates convenes in-person and/or over-the-phone to discuss legislation and developments that affect the rare disease community. The meeting/conference calls are essentially a clearing house for legislation and participating in the calls does not imply support for any of the policy proposals or legislation that are discussed or promoted at meetings.
Upcoming Webinars
September 30, 2026, 2:00-3:00pm ET
Speakers and agenda to be announced
Archive of Past Webinars
2026
- July 29, 2026, 2:00-3:00pm ET: Overview of Rare Disease Related Bills and the Legislative Outlook for the Remainder of the 119th Congress – Watch Here
- Overview of Appropriations and What to Expect in the Coming Months
- Dylan Simon, EveryLife Foundation for Rare Diseases
- Overview of Rare Disease Related Bills
- Patients Deserve Price Tags Act
- Maxwell Seltzer, Office of Sen. Roger Marshall
- Scientific EXPERT Act
- Ruth McDonald, Office of Sen. Amy Klobuchar
- Genetic Counselor Services Act
- Carrie Haverty, National Society of Genetic Counselors
- Patients Deserve Price Tags Act
- Overview of Appropriations and What to Expect in the Coming Months
- June 30, 2026: Update on H.R. 1 Implementation/Impacts on Medicaid and ICD Code Nominations – Watch Here
- Jamie Sullivan, EveryLife Foundation for Rare Diseases
- Kathryn Poe, EveryLife Foundation for Rare Diseases
- Nicole Bick, Stateside Associates
- Melissa Haendel, Translational and Integrative Sciences Laboratory
- May 28, 2026, 2:00-3:00pm ET – Overview of Rare Disease Advocacy and Legislation Relating to Caregiving and Telehealth – Watch Here
- Sarah-Lloyd Stevenson, EveryLife Foundation for Rare Diseases Board of Directors
- Rhonda Richards, American Association of Retired Persons (AARP)
- Shannon Woods, Muscular Dystrophy Association
- April 23, 2026, 2:00pm-3:00pm ET – Overview of Home and Community Based Services and Rare Disease Related Bills – Watch Here
- Amy Aikins, EveryLife Foundation for Rare Diseases
- Zachary Newman, Office of Representative Josh Gottheimer
- Max Karlin, Office of Representative Brett Guthrie
- March 26, 2026 – Updates from Recent Rare Disease Advocacy Activities During and Following Rare Disease Week and an Overview of Appropriations Priorities and Recently Introduced Rare Disease Related Bills – Watch Here
- Jamie Sullivan, EveryLife Foundation for Rare Diseases
- Dylan Simon, EveryLife Foundation for Rare Diseases
- Victoria Gemme, Leavitt Partners
- Sarah Chamberlin, Flok Health
- January 29, 2026 – Organizational Policy Priorities for the 119th Congress in 2026 – Watch Here
- Kimberly Beer, National Health Council
- Savannah Sims, Research!America
- John Aguilar, Alliance for Regenerative Medicine
- Antoinette Gingerelli, National Alliance for Caregiving
- Jamie Sullivan, EveryLife Foundation for Rare Diseases
2025
- December 2, 2025 – Year End Landscape for the Rare Disease Community- Watch Here
- Annie Kennedy, EveryLife Foundation for Rare Diseases
- Jamie Sullivan, EveryLife Foundation for Rare Diseases
- Jennifer Dexter, National Health Council
- October 30th, 2025 – Review of Current Legislation and How the Rare Disease Community Can Make the Most Out of the Rest of this Year with our Short-Term and Long-Term Policy Goals – Watch Here
- Nicholas Manetto, Faegre Drinker Consulting
- Dylan Simon, EveryLife Foundation for Rare Diseases
- Jamie Sullivan, EveryLife Foundation for Rare Diseases
- Dominique Lessard, KIF1A.ORG
- Annie Kennedy, EveryLife Foundation for Rare Diseases
- September 25th, 2025 – Rare Disease Legislative Updates and How Advocates Can Support – Watch Here
- Kate Gates, Pulmonary Fibrosis Foundation
- Becky Abbott, National Foundation for Ectodermal Dysplasias
- Nicholas Manetto, Faegre Drinker Consulting
- Dylan Simon, EveryLife Foundation for Rare Diseases
- July 10th, 2025 – Important RDLA Community Webinar: H.R.1 & What it Means for Rare Diseases – Watch Here
- Megan Herber, Principal – Faegre Drinker Consulting
- Kacey Dugan, Director of Policy & Regulatory Affairs – Faegre Drinker Consulting
- David Benson, Senior State and Local Campaigns Manager – American Cancer Society
- Annie Kennedy, Chief of Policy, Advocacy, and Patient Engagement – The EveryLife Foundation for Rare Diseases
- Jamie Sullivan, Vice President of Policy – The EveryLife Foundation for Rare Diseases
- June 26th, 2025 – A Review of Rare Disease Legislation and How Advocates can Support – Watch Here
- Ensuring Lasting Smiles Act (ELSA) – Becky Abbott, National Foundation for Ectodermal Dysplasias
- New Era of Preventing End-Stage Kidney Disease Act – Matthew Johnson, NephCure
- Credit for Caring Act – Sarah Osuna, Alzheimer’s Association
- Ensuring Nationwide Access to a Better Life Experience (ENABLE) Act – Anna Fedewa, National Down Syndrome Society
- Review of Reconciliation Legislation – Dylan Simon, The EveryLife Foundation
- May 29th, 2025 – Impact of the Reconciliation Bill on Rare Diseases – Watch Here
- Nicholas Manetto – Principal, Faegre Drinker Consulting
- Dylan Simon – Senior Director of Policy, The EveryLife Foundation
- Jamie Sullivan – Vice President of Policy, The EveryLife Foundation
- Gloria Rodriguez – Rare Disease Parent and Advocate
- April 22, 2025 – The First 100 Days of this Congress and Administration and the Impact on the Health Care and Rare Diseases Landscape – Watch Here
- Caitlin Van Sant, Principal, Mehlman Consulting
- Clay Alspach, Principal, Leavitt Partners
- Shayne Woods, Vice President, Alpine Group
- Remy Brim, Ph.D., Practice Head, Principal, BGR Group
- March 27, 2025 – Rare Disease Legislative Updates for the 119th Congress — Watch Here
- Jackie Weinreich – Office of Congresswoman Doris Matsui
- Matthew Marks, Leukemia & Lymphoma Society
- Nisha Quasba, Faegre Drinker
- Jamie Sullivan, EveryLife Foundation
- January 23, 2025, Organizational Policy Priorities for the 119th Congress—Watch Here
- Jennifer Dexter, National Health Council
- John Aguilar, Alliance for Regenerative Medicine
- Jamie Sullivan, EveryLife Foundation for Rare Diseases
- Toni Gingerelli, National Alliance for Caregiving
- Ron Bartek, National Center for Advancing Translational Services
2024
- January 18th: 2024 Policy Priorities —Watch Recording Here
- Cynthia Bens, Personalized Medicine Coalition
- Shelia Murphy, Research!America
- Jamie Sullivan, EveryLife Foundation for Rare Diseases
- Jennifer Dexter, National Health Council
- March 21st: Current Federal Legislation Impacting the Rare Disease Community —Watch Recording Here
- Sarah Chamberlin, flok: Medical Nutrition Equity Act (H.R. 3783)
- Kara Berasi, Haystack Project: PROTECT Rare Act (H.R. 6094)
- Brita Dornan, NephCure: New Era of Preventing End-Stage Kidney Disease Act (H.R. 6790)
- Baillie McGowan, EveryLife Foundation for Rare Diseases: Accelerating Kids’ Access to Care Act (H.R. 4758/S. 2372), Safe Step Act (H.R. 2630/S. 652), Creating Hope Reauthorization Act (H.R. 7384)
- April 25th: National Minority Health Month: Current Legislation to Improve Health Disparities — Watch Recording Here
- Jennifer Dexter, National Health Council: DEPICT Act Implementation
- Micah Burbanks-Ivey, Rare Disease Diversity Coalition: Health Equity Innovation Act of 2023 (H.R. 5520)
- Megan McCully, Office of Senator Tim Scott (SC): Sickle Cell Disease and Other Heritable Blood Disorders, Research, Surveillance, Prevention, and Treatment Act (S. 1852)
- May 16th: Share Your Story Webinar: Digital Storytelling — Watch Recording Here
- Lani Knutson, Cure CMD, Our SELENON Life Blog
- Sarita Edwards, E.WE Foundation: Being Rare Podcast
- Cory Lewis, Redmoon Project: Storytelling through Videography
- May 30th: Current Federal Legislation Impacting the Rare Disease Community — Watch Recording Here
- Michael Pearlmutter, EveryLife Foundation for Rare Diseases: Introduction
- Jennifer Leib, Innovation Policy Solutions: FDA’s Laboratory-Developed Test (LDT) rule
- Jason Menzo, Foundation Fighting Blindness: LOANS for Biomedical Research Act, H.R 7539
- Dylan Simon, EveryLife Foundation for Rare Diseases: Updates on Mark-Ups and Rare Disease Center of Excellence
- June 27th: Youth-Focused Rare Disease Policy and Advocacy Opportunities — Watch Recording Here
- Lonnie Lu Rivera, Young Adult Advocate: Accelerating Kids Access to Care Act
- Jamie Sullivan, EveryLife Foundation for Rare Diseases: Updates on Creating Hope Reauthorization Act and Accelerating Kids Access to Care Act
- Dr. Laura Tosi, OI Foundation: National Somewhere To Go Transition Initiative
- Lisa Facciolla and Jess Myers, Hereditary Angioedema Association: Young Adult Coalition
- Courtney Felle, EveryLife Foundation for Rare Diseases: YARR Program
- September 24th: Discussion of Newborn Screening and Diagnostics for Rare Diseases — Watch Recording Here
- Marianna Raia, MS, CGC, Expecting Health
- Emily Packard Dawson, Ph.D., National Academies of Sciences, Engineering, and Medicines
- Dylan Simon, EveryLife Foundation for Rare Diseases
- Matthew Ellinwood, DVM, Ph.D., National MPS Society
- October 30th: Updates on Rare Disease Legislation and How You Can Support as an Advocate — Watch Recording Here
- Jamie Sullivan, EveryLife Foundation for Rare Diseases: Legislation to Reauthorize the Rare Pediatric PRV Program
- Nicholas Manetto, Faegre Drinker Consulting: Accelerating Kids’ Access to Care Act
- Jackie Weinrich, Office of Congresswoman Matsui: Retaining Access and Restoring Exclusivity (RARE) Act
- Charles Husser, Arthritis Foundation,: Safe Step Act
- November 21st: A Look Ahead at the 2025 Landscape – Opportunities for Rare Disease Community — Watch Recording Here
- Annie Kennedy, EveryLife Foundation for Rare Disease
- Jamie Sullivan, EveryLife Foundation for Rare Disease
- Nicholas Manetto, Faegre Drinker Consulting
- Nisha Quasba, Faegre Drinker Consulting
Share Your Story Webinars
During these quarterly webinars advocates receive tips and tricks on how to best tell their story before practicing and receiving feedback from coaches consisting of RARE Foundation staff and experienced rare disease advocates from the community.
Topics are changed yearly to address the needs and priorities of the community.
Archive of Past Webinars
2025
- October 9, 2025: Sharing Your Story While Living with a Disability – Watch Here
- April 1, 2025: Sharing Your Story Through Art – Watch Here
2024
- May 16, 2024: Share Your Story: Digital Storytelling – Watch Recording Here
- November 13, 2024: Share Your Story Through Film – Watch Recording Here
Advocacy 101
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Intro to State Advocacy
This session provides an overview of state-level advocacy, including how legislation is developed and how advocates can engage with elected officials.
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How to Foster a Relationship with Your Member of Congress
Members of Congress are more likely to support a policy proposal when they hear directly from people who live in their district.
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Ask Your Members of Congress to Join the Rare Disease Congressional Caucus
Urge your representatives to join the caucus and stand up for people with rare diseases.
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Youth and Teen Social Story on Meeting with a Legislator
This social story helps prepare children and families for meeting with a legislator by walking through what to expect.
Policy Primers
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PDUFA Policy Primer
Understand the history, purpose, and reauthorization process for PDUFA and why it matters for rare disease therapy development.
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Medicaid
An overview of Medicaid and its critical role in supporting individuals with rare diseases, including access to specialized treatments, home and community-based services, and long-term care.
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Insurance Regulation and Advocacy Strategies
This primer provides an overview of each type of insurance and offers practical guidance on advocating for improvements within each system.
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Newborn Screening
Newborn screening is a critical public health program that facilitates the screening of babies for serious conditions for which early interventions or treatments are available.
Tip Sheets
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How to Attend a Congressional Town Hall Meeting
Take part in meetings to build a relationship with your Member of Congress and their staff and raise the profile of the rare disease community to policymakers.
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Scheduling a Meeting with Your Legislator
The most effective interaction you can have with your legislator is a face-to-face meeting.
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Share Your Story Tip Sheet For Youths & Teens
Easy tips for youth and teens to share your story with confidence and make an impact.
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How to Make Connections with your Members of Congress
Simple tips for youth and teen advocates to reach out, build connections, and make your voice heard with lawmakers.
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Advocacy & Congressional Appropriations
Congress has the authority, under Article I of the Constitution, to spend tax dollars. The appropriations process allocates money for the government each fiscal year.
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How to Engage with Medicaid Drug Utilization Boards
Practical guidance for patients and advocates on when and how to engage with DUR Boards to help ensure rare disease treatments remain accessible.
RARE Advocates provides a Legislative Scorecard for advocates to use when communicating and meeting with their Members of Congress.
