Schedule

Patients and care partner topics will be located in large room, while separate breakout session for scientists and researchers will take place in smaller room.

VCP disease doesn't look the same in everyone. Join our expert clinicians as they explore the three major clinical presentations — Inclusion Body Myopathy (IBM), Frontotemporal Dementia (FTD), and Paget's Disease of Bone — and why the same genetic mutation can lead to such different experiences. Whether you are newly diagnosed or have been living with VCP disease for years, this session will help patients and caregivers better understand their own journey and what to expect across the spectrum of this complex condition. Speakers: Chris Weihl, MD, PhD — Washington University in St. Louis Nupur Ghoshal, MD, PhD — Washington University in St. Louis Speaker Bios

Deeper dive into current research tools, emerging methodologies, and technical challenges in VCP research. Share resources and discuss best practices for data collection and analysis in rare disease studies.

What works in real life? Patients and caregivers share their most effective strategies for managing VCP disease—from navigating healthcare systems to adapting daily routines. Everyone will be encouraged to participate, and we'll use a special format to make it easy for everyone to share. Come ready to learn from each other's experiences and leave with practical insights.

Ever wondered what really happens in a clinical trial? We pull back the curtain to share insider stories and demystify the process. Learn what's required, what participants actually experience, and what questions you should be asking before enrolling. Speaker: Han C. Phan, MD — Director of Clinical Research, Rare Disease Research Speaker Bios

Lunch will be provided with your admission. Offers opportunities to engage with patients and those affected by VCP disease.

Session 12: The Whole Person Approach — Life Beyond Diagnosis Living with VCP is about more than managing symptoms — it's about maintaining your identity, relationships, and sense of purpose. In this roundtable discussion, we'll explore holistic strategies that address the full spectrum of life with a rare disease: diet and nutrition, mental health, social connections, adaptive approaches, and finding meaning in the journey. Share your own strategies and learn from others navigating the same path. Speaker: Sujata Patel, RPh, CFMP — Founder, Wellness With Sujata Speaker Bios

As we close the 2026 VCP International Scientific and Community Summit, we'll reflect on key insights from the weekend and identify concrete next steps. Leave feeling connected to this community and empowered to take action in your own advocacy, care, and research journey—and get ready for the Celebration later that night!

Learn more at: https://go.curevcp.org/2026atlanta