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Our work supports the gathering, structuring and sharing of critical patient data at scale, that will accelerate diagnosis, disease understanding, and development of future treatments and cures.

Data from each patient’s medical history, genome, and other sources are critical to disease understanding, diagnosis, treatment, and the development of future medicines and cures. This is why it is so important for patients and caregivers to be able to easily collect, access and share their data with doctors, researchers or drug developers to fuel progress within and across rare diseases.

RARE-X provides the support, technology, tools, and resources necessary for successful data collection, and secure but open data sharing, on a global scale.

As a non-profit, our focus is on collaboration and innovation that move us rapidly toward the goal of making treatments available to every rare disease patient. We provide our services at no cost to patients. You always control who has access to your data and for what purposes, and you can choose to take it with you at any time.

Your data is pivotal to progress in rare disease research, diagnosis, and treatment.

The goal of RARE-X is to make the important task of data collection free, accessible and easy for rare disease communities (and patient advocates like you), while ensuring that the data you collect is as useful and shareable as possible for researchers and others working on treatments and cures.

We believe supporting patients to become well-equipped data stewards will benefit everyone working in rare disease.

To assist you, RARE-X will provide access to advisors with direct and relevant experience in data collection and sharing. They will help you by providing:

  • Guidance on collecting data and what’s required to make that data useful for diagnosis, drug discovery, and development, and other how tos
  • Data governance and consent support (to help you direct who has access to your data and for what purposes)
  • Insights and best practices on how to engage with researchers, clinicians or others interested in your communities’ data
  • A partnership with you

We care about open data sharing, but not without proper data governance

Progress will never be made if your data can’t be seen or analyzed by doctors, researchers or drug developers who can use it to get to a faster diagnosis, or to better understand your disease and how to potentially treat or cure it. . At the same time, your data must also be protected and should only be shared with those whom you want to have access to it, and only for reasons you determine are appropriate and beneficial.

At RARE-X, we help you sort through the consent process, set up systems to automatically screen and manage requests for access to your data, and secure your data according to the most stringent data privacy standards and regulations in effect globally — providing you with all you need to become successful data stewards and sharers.

Our Philosophy Makes RARE-X Unique:

  • Patients should own their data and be supported to do it properly and easily
  • Data Collection should be systematized to help support large scale global harmonization and usage.
  • Opening up data (where possible), will level the playing field – creating more opportunities for discovery

As Patient Engagement Lead for RARE-X, I will be guiding people like me, people who are anxious and desperate, and may not know much about data, never heard of an IRB, and don’t know what governance is, but either the FDA or a researcher, or somebody at a conference said, ‘You have to collect data.

Megan O’Boyle, Parent Advocate,
Phelan-McDermid Syndrome -
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