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The NF Data Portal is a public data repository that stores and shares data generated by multiple collaborative research programs focused on neurofibromatosis (NF) diseases (neurofibromatosis type 1, type 2, and schwannomatosis).

Because NF diseases are relatively rare, so samples and data generated in this area are precious. This is why open science principles are so valuable—data sharing and collaboration maximizes the value and impact of research. The NF Data Portal exists to support this joint effort.

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The NF Data Portal was created to facilitate the discovery and exploration of NF datasets, analysis tools, resources, and publications. The open access data in the NF Data Portal is generated by studies backed by funding organizations, including Children’s Tumor Foundation (CTF)Neurofibromatosis Therapeutic Acceleration Program (NTAP), and Gilbert Family Foundation (GFF). Some studies are funded in conjunction with one another—such a group of funded projects is called an initiative on the portal. To get familiar with the Funded studies produce data files, metadata (also called annotations), publications, and biological tools like cell lines, mouse models, and plasmids. Study products, such as multiple data files, may be bundled into a dataset, or explored and analyzed with computational tools developed by the community.

The organizational structure of the NF Data Portal , check out this diagram:

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is as follows:

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More recently (May 2021), we added “hackathon projects” to the portal. This collection is the output of events like the 2021 Hack for Rare, in which community members use data, software, and other resources to develop mini-research projects over the course of a weekend or a few weeks.

To learn more about how the NF Data Portal is structured so that you can make the most of your time exploring and using it, see

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