“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"

"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."

“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.”

“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.”