Breaking Down Barriers to Make Neurofibromatosis Research Tools Accessible and Effective

Author: Gilbert Family Foundation

Published On: 6/3/26

In 2025, Gilbert Family Foundation launched a five-year investment to strengthen the Neurofibromatosis Research Tools Central (NFRTC) database and the NF Data Portal. NFRTC is an open-access catalog of vital experimental resources – think cell lines, animal models, and algorithms – designed to prevent duplicated effort and accelerate NF research. Both NFRTC and the NF Data Portal are powered by Sage Bionetworks’ Synapse platform, which supports researchers worldwide and manages over 5 petabytes of biomedical data. As a dedicated subset of this massive infrastructure, the NFRTC and NF Data Portal currently hosts over 300 terabytes of NF-specific data.

The goal of the investment was to develop a comprehensive, disease-specific research platform that integrates advanced search technologies, artificial intelligence, research tool validation mechanisms, and curated data on preclinical models to help researchers more effectively identify and utilize the resources they need. Through the expanded investment, the platform enables researchers across the globe to rapidly identify, evaluate, and access critical resources for studying NF1, NF2, schwannomatosis, and related conditions.

One of the most valuable aspects of this partnership is its focus on addressing the real challenges NF researchers face daily. Annual scientific workshops and ongoing user research ensure the platform evolves directly with the needs of NF scientists. This commitment to community-driven development keeps the platform nimble and adaptable to the rapidly changing landscape of artificial intelligence and scientific infrastructure.

Read More

Find upcoming NF Events            Donate to NF          Stay iNFormed