Xplore RARE-X

We Will Never Sell Patient Data Because It Is Not Ours to Sell

At RARE-X, we are entrusted with a great responsibility: to collect patient data on behalf of patients, keep it safe, and make it available to researchers and drug development companies chosen by patients. We do not own any of this data; we hold it on behalf of patients, who retain ownership of their own data. For that reason, we will never sell access to patient data; it is simply not ours to sell.

Some people mistakenly assume that RARE-X would sell data because that is how a lot of the online world works for services offered free of charge, but that model does not apply here. To dispel these misconceptions, allow us to explain how our business model works in a sustainable way that does not rely on selling data.

RARE-X is a next-generation patient advocacy organization. We serve patients with technology.

It used to be that rare disease patient advocates were focused on raising awareness and research funding and therefore needed help building websites, organizing events, and putting together a scientific advisory board. Today, these groups have grown more sophisticated, taking a more active role in driving research and drug development. As a result, their needs have grown more complex too: they need access to tools and expertise to gather the data essential to driving research, and they need to be able to control access to that data to ensure it is put to work and not hidden away from relevant researchers and drug developers.

The infrastructure required to accomplish what RARE-X is doing is highly sophisticated. Rather than investing a large amount of money and effort into building and operating that kind of infrastructure ourselves, we have partnered with the Broad Institute of MIT and Harvard, a non-profit research institution in Cambridge, Massachusetts, that builds, operates and oversees the technology underlying the RARE-X platform. We are fortunate to be able to extend the benefits of their technology investment, which serves and is supported by many other groups, to serve the needs of rare disease organizations at a fraction of what this would cost otherwise.

While we do have other operational costs, our fundraising mechanisms are quite mundane. We are funded the same way many other patient organizations are funded through a combination of government grants, industry grants, corporate sponsorships, philanthropy, and other means we can devise.

From time to time, we may be engaged by industry to provide services for a fee. This might involve designing a study, building a questionnaire, or supporting the patient community through our growing patient engagement team. Never, though, does that involve selling data.

We believe it’s essential for patient organizations to have access to the best data scientists, governance, and other expertise. This access ensures their data is gathered correctly from a legal, scientific, technological, and ethical perspective. Proper data collection can be time-consuming and expensive for any patient organization to take on by itself.

We are working to systematize this process. We share the urgency of the patient organizations we serve. We want to put an end to rare disease organizations wasting time and money freeing them to focus their energy on advancing research and drug development.

We believe that there is a more efficient way to support the estimated 9,500 different rare diseases in their data collection and sharing efforts. We also believe that this new approach will address some of the unintentional consequences of the current system and support a new approach that ends barriers toward progress and accelerates future treatments and cures.

We are taking on that burden. The patient isn’t our product. The patient is our customer.

– Nicole Boice – Founder and CEO, RARE-X

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