Engaging a community to enable disease-centric data sharing with the NF Data Portal.

A significant challenge facing rare disease communities is finding a sufficient quantity and variety of data to develop and test disease-specific hypotheses. Here we describe an approach to data sharing in which stakeholders from the neurofibromatosis (NF) research community collaborated to develop a disease-focused data portal with the goal of supporting scientists within and outside the community as well as clinicians and patient advocates.