We believe that rare patient communities, equipped to securely gather and share their data with collaborating researchers and companies around the globe, will significantly expand diversity, equity, and inclusion in research and dramatically accelerate progress across rare diseases.
RARE-X believes that by enabling rare patient communities to more easily gather, structure and securely share critical inclusive data, through a common platform, in collaboration with researchers, drug developers and clinicians anywhere in the world, we will accelerate diagnosis, disease understanding, and development of future treatments and cures across more than 9,500 rare diseases.
RARE-X is a 501(c)(3) non-profit created by leaders in the fields of patient advocacy, medical research, biopharma, and technology.
RARE- X is piloting a series of demonstration projects, partnering with rare disease communities, to apply technology proven in other large-scale public health and genomic data-sharing initiatives to support the global needs of those developing treatments and caring for rare disease patients.
RARE-X is leveraging existing technology powered by the Broad Institute of MIT and Harvard, which will support patients (in data collection, structuring and responsible sharing), clinicians (in accelerating diagnosis and improving and tracking health outcomes), researchers and biopharma (with the data they need to identify, develop and track the impact of breakthrough treatments and cures).
RARE-X is adapting proven technologies and partnering with leading experts to create a federated data analysis platform, specifically designed by rare community leaders and scaled to support the diverse and expanding needs of rare disease research, development and care, around the world and in all communities.
OWNERSHIP of Data:
STANDARDIZATION of Data:
RETURNING DATA to Patient Community
COLLABORATION among stakeholders:
DIVERSITY AND INCLUSION:
GOVERNANCE of Data:
FAIR Guiding Principles
SCALABILITY of Technology and Processes:
GUIDANCE & EDUCATION for Rare Disease Patients/Communities:
GUIDANCE & EDUCATION for other rare disease stakeholders:
INVESTMENT REQUIRED FOR THE RARE-X DCP:
RARE-X Diversity, Equity, and Inclusion Mission
RARE-X believes that diversity, equity, and inclusion is the core of our work. We strive to promote the advancement of inclusive rare disease communities that value diverse, innovative strategies to solving the complex needs of rare disease patients. We accomplish this mission by engaging rare disease communities, leveraging national multi-disciplinary partnerships, identifying best practices for collecting diverse data, and fostering an organizational culture of continuous internal reflection and proper adjustment to accomplish our vision.