Allison Peck

Allison Peck is a graduate of Georgia Tech with a bachelor’s degree in industrial engineering. Starting her career as a manufacturing engineer and project manager, she has continued her professional experience with website design and small business management. Peck currently serves as a board member and volunteer treasurer for Cure VCP Disease, a rare disease patient advocacy organization. She is committed to doing everything in her power to aid in the effort to help her husband, a rare disease patient, find a cure for valosin-containing protein (VCP) disease. Peck has been a key contributor in introducing patient-powered research platforms to the community including the Cure VCP Disease patient registry with CoRDS (Ikenaga 2020), the AllStripes patient medical records platform, and a functional measures study with Nationwide Children’s Hospital and Casimir. Through these initiatives, successful collaboration between researchers and patient advocacy has resulted in meaningful patient-reported data collection, effective clinical trial design and efficient study start up. Peck’s greatest accomplishment thus far is creating and leading the VCP Standard of Care Consortium to elevate medical care for VCP patients. She scoped the project, recruited over 40 experts to the team, facilitated the consortium meetings and navigated roadblocks in achieving published consensus guidelines (Korb 2022). Through becoming an ambassador Peck hopes to better serve her fellow rare disease community members through sharing her experiences and learning best practices.

Involvement with PCORI

Mentorship Program Participant

Ambassador Interests

Health Conditions Health Conditions These are the broad terms we use to categorize our funded research studies; specific diseases or conditions are included within the appropriate larger category. Note: not all of our funded projects focus on a single disease or condition; some touch on multiple diseases or conditions, research methods, or broader health system interventions. Such projects won’t be listed by a primary disease/condition and so won’t appear if you use this filter tool to find them. View Glossary
Populations Populations PCORI is interested in research that seeks to better understand how different clinical and health system options work for different people. These populations are frequently studied in our portfolio or identified as being of interest by our stakeholders. View Glossary
Stakeholder Types
State State The state where the project originates, or where the primary institution or organization is located. View Glossary

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