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CZI Science in Society: Rare As One Network 2025 Meeting

  • Writer: Cure VCP Disease, Inc.
    Cure VCP Disease, Inc.
  • Jun 15
  • 2 min read

Our team—Dr. Zollie Yavarow, Allison Peck, and Nathan Peck—represented Cure VCP Disease at the CZI Science in Society: Rare As One Network 2025 Meeting (May 27-30).

From left to right: Katie Stevens - Team Telomere, Andra Stratton - CZI, Allison Peck, Nathan Peck, Zollie Yavarow, Tara Zier - Stiff Person Syndrome Research Foundation
From left to right: Katie Stevens - Team Telomere, Andra Stratton - CZI, Allison Peck, Nathan Peck, Zollie Yavarow, Tara Zier - Stiff Person Syndrome Research Foundation

While our CZI funding cycle has concluded, this meeting allowed us to share valuable experiences with the over 200 attendees. It is refreshing to be together with so many rare disease powerhouses who are on a similar quest for a cure. Meeting the new Cycle 3 cohort was particularly rewarding—we had the chance to share insights from our journey and learn from their fresh perspectives.


Our team left the meeting with a clear perspective on progressing our mission - accelerating treatment development for our patients. Over the next few years, our focus will be to:


Nathan Peck with Bina Maniar - Project 8p & Indu Navar - EverythingALS
Nathan Peck with Bina Maniar - Project 8p & Indu Navar - EverythingALS

  1. Expand the VCP Family Registry - Knowing the patients and all their family members is key! Our expanded family registry will be a central place for them to store valuable data.


  1. Make biosamples available for research - We have plans to use these biosamples to understand the similarities and differences that could be found in a person’s blood.



Nathan Peck with Jeffrey Randall Allen- Association for Creatine Deficiencies & winner of the MrBeast Beast Games on Amazon Prime
Nathan Peck with Jeffrey Randall Allen- Association for Creatine Deficiencies & winner of the MrBeast Beast Games on Amazon Prime

  1. Diagnosis and education - We need to help families better understand the disease and help them get properly diagnosed in a timely manner.


  1. Invest in breakthrough research with strategic partners - We are not alone in searching for a cure, and we can come alongside others as a research partner. The potential of cross-disease collaborations and sharing resources holds great promise.


The conference was attended by over 200 representing 100+ organizations
The conference was attended by over 200 representing 100+ organizations

The rare disease community is resilient and thrives when we work together.



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