Registration

Opening Remarks

EMPOWER Keynote: Beyond the Diagnosis: A Sister’s Journey from Caregiver to Changemaker

Christina Sanlnocencio, Ph.D., CPH, CNP, Founder, LGS Foundation, Assistant Professor of Communication, Fairfield University

Behind every Patient is a family whose life is forever changed — and often, an unsung hero whose story is rarely told. In this deeply personal keynote, Christina SanInocencio shares her journey growing up alongside her brother, Michael, who has lived with Lennox-Gastaut Syndrome (LGS), a rare and severe form of epilepsy, for more than 30 years.

From sibling to caregiver, advocate and founder of the Lennox-Gastaut Syndrome Foundation, Christina will share how her family’s journey inspired a lifelong commitment to ensuring Patient and family voices help shape rare disease research and drug development — illuminating the extraordinary power of transforming lived experience into advocacy, community and action.

EDUCATE: Interactive Session: Finding Your Voice: Developing Your Personal Advocacy Story

This interactive workshop will guide Patients, advocates and families in crafting a compelling three-minute personal story and "elevator pitch" for advocacy, policymaker engagement, public testimony and more. Participants will also explore how to effectively share their stories on social media ― learning best practices, common pitfalls to avoid and strategies for using digital platforms to educate, inspire and drive meaningful action.

Discussion leads:

• Michelle Liu, MPH, Advocacy & Engagement, Sr. Program Manager, Hepatitis B Foundation 
• Gavin Jones, Vice President, Patient Strategy, Lumanity

Networking Break

ENGAGE: MFN Unpacked: What’s at Stake for Patients & Innovation

What could Most Favored Nation (MFN) pricing mean for Patients and the future of medical innovation? This session will examine the potential impact of MFN policies on Patient access to life-changing medicines (beyond QALY), investment in research and development and the continued advancement of innovative therapies.

Panelists:

• Daneen Sekoni, Vice President, Policy & Advocacy, Cancer Support Community 
• Melissa Horn, Director, State Legislative Affairs, Dept. of Advocacy & Access, Arthritis Foundation 

Moderator: Grant Cale, Sr. Director, Strategic Alliance Liaison, U.S. Policy & State Government Affairs/Corporate Affairs, Bristol Myers Squibb

ENGAGE: The Intersection of Politics, Policy & Advocacy: 

Policymakers – Panel & Awards Ceremony

Networking Lunch

ISSUE BRIEFING: The Importance of PDUFA — Strengthening the FDA & Advancing Medical Innovation

As Congress prepares for PDUFA reauthorization in 2027, learn why a strong, well-resourced FDA is essential to advancing medical innovation, ensuring timely regulatory reviews and accelerating Patient access to life-changing therapies.

Presented by: Nick Shipley, Sr. Policy Advisor, We Work For Health

EDUCATE: AI & Your Healthcare Journey Navigating the Future of Patient Care

Artificial intelligence and technology are rapidly reshaping the Patient and caregiving experience. This practical session will explore how these tools can help Patients and caregivers research a diagnosis, prepare for appointments, explore treatment options, manage ongoing care, ask better questions and communicate more effectively with healthcare providers — ultimately supporting more informed decisions throughout the care journey. Panelists will address what to trust, where AI has limitations, how to protect personal health data and how AI and technology can meaningfully support and complement the Patient’s overall care journey.

Panelists: 

• Alisa Brownlee, Home Accessibility & Assistive Technology Specialist, Care Services, ALS United Mid-Atlantic 
• Nicole Johnson, Co-Founder, Executive Director, Mom to Josie, FOXG1 Research Foundation

Moderator: Ian Belizaire, Director, Alliance Development and Government Relations, Pfizer

Closing Remarks