Patients often struggle to gather, access, and share data that could lead to real breakthroughs
PATIENTS' DATA POWERING PROGRESS
PATIENTS' DATA POWERING PROGRESS
RARE-X, a research program of Global Genes, provides a collaborative platform for global data sharing and analysis to accelerate treatments for rare disease.
RARE-X, a research program of Global Genes, provides a collaborative platform for global data sharing and analysis to accelerate treatments for rare disease.
RARE-X equips patients to share their data with global researchers, clinicians, and drug developers
We believe empowering patient communities as data stewards benefits all rare disease stakeholders!
Scaling and Systematizing data collection will accelerate future treatments and cures
HOW CAN WE HELP?
Patients & Caregivers
Researchers
Industry Partners
Xplore Latest News
“I fundamentally agree with why we're building RARE-X. Health data is only going to become more pervasive and that data is critical to the future of treating genetic diseases.Patients should own their own data and it should be in a common and functional architecture"
Walt KowtoniukVenture Partner, Third Rock Ventures 
"Building a common framework, such as RARE-X, . . . will make a huge difference in terms of creating the critical mass to allow us to engage the academic, clinical, and commercial sector. (RARE-X will create) the potential for better understanding and new knowledge such that the natural history of these terrible conditions can be altered."
Alastair KentFormer Executive Director of Genetic Alliance UK 
“The people and organizations in RARE-X are top notch. Their stated goal to empower broad data sharing across the rare disease community is important and would advance collaboration and the finding of commonalities among diseases, both of which would improve the pace of progress in rare disease diagnosis and treatment.”
Chris AustinDirector, National Center for Advancing Translational Sciences - National Institutes of Health 
“This initiative significantly changes the outlook for patient communities waiting for treatments. RARE-X gives patients everywhere the opportunity to become central drivers of progress in their disease and makes everyone—researchers, drug developers, and everyone else in the system who are working on their behalf—to be more effective.”
Matt MightDirector of the Hugh Kaul Precision Medicine Institute at the University of Alabama Birmingham 
Previous
Next
“I fundamentally agree with why we're building RARE-X. Health data is only going to become more pervasive and that data is critical to the future of treating genetic diseases.Patients should own their own data and it should be in a common and functional architecture"
Walt KowtoniukVenture Partner, Third Rock Ventures
"Building a common framework, such as RARE-X, . . . will make a huge difference in terms of creating the critical mass to allow us to engage the academic, clinical, and commercial sector. (RARE-X will create) the potential for better understanding and new knowledge such that the natural history of these terrible conditions can be altered."
Alastair KentFormer Executive Director of Genetic Alliance UK
“The people and organizations in RARE-X are top notch. Their stated goal to empower broad data sharing across the rare disease community is important and would advance collaboration and the finding of commonalities among diseases, both of which would improve the pace of progress in rare disease diagnosis and treatment.”
Chris AustinDirector, National Center for Advancing Translational Sciences - National Institutes of Health
“This initiative significantly changes the outlook for patient communities waiting for treatments. RARE-X gives patients everywhere the opportunity to become central drivers of progress in their disease and makes everyone—researchers, drug developers, and everyone else in the system who are working on their behalf—to be more effective.”
Matt MightDirector of the Hugh Kaul Precision Medicine Institute at the University of Alabama Birmingham
Previous
Next