Allison Peck | Co-Foundet
Cure VCP Disease
Allison Peck co-founded Cure VCP Disease, with her husband Nathan who is a patient, in 2018 to drive progress towards treatments for diseases caused by pathogenic variants in the VCP/p97 gene. With backgrounds in industrial engineering and leading companies, they have built a network and the infrastructure to help de-risk clinical trials and drug development including a patient registry, co-designing and facilitating a natural history study, establishing a standard of care, and facilitaing a research network. Most importantly, Cure VCP Disease works to support patients and break down barriers in their healthcare and diagnostic journey.
Appearances:
Day 2 - World Orphan Drug Congress USA 2025 @ 11:00
Panel: Addressing common barriers in rare hereditary, progressive adult-onset diseases
This panel will be focused raising awarness about adult onset, genetic, neurodegenerative diseases. We will discuss roadblocks leading to delayed diagnosis and areas of opportunity to change this pattern with a focus on genetic testing and differential diagnosis. We will highlight and explore the critical importance of recognizing the unique challenges for those impacted by diseases that hit adults in the prime of their lives and specifically those with limited or no treatment options that may lead to cognitive decline and dementia. We hope this panel will encourage further discussion resulting in a tighter bond, strength in numbers, louder voice in the rare community and a strengthening coalition and call to action.
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