Researchers, Clinicians, and Patients to Convene in Atlanta for Landmark VCP Summit
- Cure VCP Disease, Inc.
- 3 hours ago
- 3 min read
First-Ever Combined Scientific and Patient Community Conference Brings Together the Broad VCP Disease Research and Patient Community to Accelerate Progress Against a Rare and Devastating Disease
ATLANTA, GA — July 22–25, 2026 — The 2026 VCP International Scientific and Community Summit will bring together scientists, clinicians, patients, and caregivers at the Hyatt Centric Midtown Atlanta for four days of cutting-edge science, patient-centered dialogue, and community building around VCP (valosin containing protein).
The Summit, organized by Cure VCP Disease, marks the first time the organization’s scientific conference and patient community conferences have been held together under one roof, creating an unprecedented opportunity for the researchers developing treatments and the patients awaiting them to learn directly from one another.
“This is a groundbreaking gathering. Bringing our scientific and patient communities together in one place is how we close the gap between what’s happening in the lab and what patients actually need.”
— Zollie Yavarow, PhD, Cure VCP Disease Director of Scientific Engagement and Collaborations
A Rare Disease at a Critical Moment
VCP associated multisystem proteinopathy (VCP-MSP) is a rare genetic condition caused by mutations in the VCP gene, leading to a progressive multisystem disorder that can affect muscle, brain, and bone. Manifestations include inclusion body myopathy (IBM), frontotemporal dementia (FTD), Paget’s disease of bone, and amyotrophic lateral sclerosis (ALS). Despite growing scientific interest and an expanding drug development pipeline, there are currently no approved treatments for this debilitating condition.
The 2026 Summit brings together more than 25 speakers and session chairs from leading institutions including the University of Miami, University of California, San Francisco, Newcastle University, University of Milan, Washington University in St. Louis, Baylor College of Medicine, and University of California, Irvine, alongside 18 poster presentations from across the broad VCP research and patient advocacy community.
Conference Highlights
Wednesday, July 22 — Welcome Evening Social
The summit opens with an evening welcome social in the hotel lobby, offering attendees the chance to reconnect with colleagues and meet fellow researchers, clinicians, patients, and caregivers.
Thursday, July 23 — Scientific Day
The first full day is dedicated to cutting-edge research, with three scientific sessions covering VCP biochemistry and structural biology, cofactor interactions and protein-protein interactions, and VCP localization and cellular functions. The day concludes with a keynote address by Michael Benatar, MD, PhD of the University of Miami on bridging ALS and VCP-MSP research to inform therapeutic development, followed by an evening reception with poster presentations.
Friday, July 24 — Science Meets Community
Day two bridges the scientific and patient communities, opening with sessions on converging pathways in proteinopathy and therapeutic development in VCP-MSP, then transitioning into a collaborative afternoon featuring sessions on translating science into solutions, the diagnostic journey, and a joint working session where clinicians, researchers, and patients define research priorities together.
Saturday, July 25 — Patient and Family Day
The final day centers entirely on patients and caregivers, with sessions on VCP’s many clinical faces, real-world management strategies, clinical trials, and whole-person approaches to living with VCP-MSP. Parallel researcher-only roundtables run concurrently, including sessions on research tools and methodologies and N-of-1 trial designs for rare disease. The day closes with a community celebration — the annual Cure VCP Disease Celebration: BBQ, Brews & Bingo fundraiser, open to all attendees. Learn more at: https://go.curevcp.org/2026atlanta
Sponsors
The summit is made possible with support from Champion-level sponsors Cure VCP Disease and The Association for Frontotemporal Degeneration (AFTD), Partner-level sponsor Muscular Dystrophy Association (MDA), and Ally-level sponsor Ultragenyx.
Registration and Information
Registration and the full schedule are available at https://go.curevcp.org/2026vision.
Members of the media interested in attending or covering the summit should contact Nathan Peck at nathan@curevcp.org.
About Cure VCP Disease: Cure VCP Disease is a patient advocacy and research organization dedicated to advancing research, building community, and accelerating treatments for VCP-associated multisystem proteinopathy.
