The LEAP into Advocacy Virtual Summit brings together rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners, and allies to discuss the latest rare disease innovations, patient advocacy, public policy, and actionable strategies to accelerate change. This event is approved for 2 CEUs.
This year’s theme is Innovation and Collaboration: Leveraging Data to Transform Rare Disease Advocacy
THURSDAY, JUNE 26, 2025 – Summit Agenda
*All times are Central Standard Time.
10:00 – 10:10 AM | Welcome & Opening Remarks | Sarita Edwards, MHA, CEO & President, The E.WE Foundation
10:10 – 10:35 AM | Leveraging Data to Drive Impact: Using Stories to Shape Policy
Presenter: Sarita Edwards, MHA, CEO & President, The E.WE Foundation
Learn how to combine qualitative stories and quantitative data to influence policy decisions and shape public narratives. This session will provide practical guidance on aligning personal experiences with data-driven messaging to create powerful, evidence-based advocacy strategies.
10:35 – 11:00 AM | Advocacy 101: Navigating the Legislative Process for Rare Disease Policy
Presenter: Kendly Jones, RDLA Program Manager, EveryLife Foundation for Rare Diseases
Discover effective strategies for drafting legislation, lobbying, and crafting compelling testimony. This session will empower advocates to navigate both state and federal policy landscapes with clarity, purpose, and impact.
11:00 – 11:25 AM | Centering Mothers: The Overlooked Impact of Maternal Health
Presenter: Trinisha Williams, CM, LM, MPH, FACCE, LCCE, LC, Founder & President, Haven Midwifery Collective
Explore how maternal health directly affects family wellbeing, advocacy efforts, and care outcomes. This session highlights the importance of using maternal health data and lived experiences to drive equitable, family-centered policy and support systems.
11:25 – 11:50 AM | Breaking the Silence: The Impacts of Mental Health on Patients and Their Families
Presenter: Dr. Ashley Perkins, PharmD, Co-Founder, We Matter Too, Inc.
Examine how mental health challenges impact individuals and families and how data can help identify needs, guide support services, and inform advocacy. This session combines evidence-based insights with lived experiences to demonstrate the power of using mental health data to drive systemic change and reduce stigma.
11:50 AM – 12:00 PM | Closing Remarks & Call to Action | Sarita Edwards, MHA, CEO & President, The E.WE Foundation
The E.WE Foundation 