Raremark® launches the Xperiome™ patient-powered knowledge platform to deliver new therapies faster and smarter

Raremark®, the leading online patient community in rare disease, has today launched its patient-powered knowledge platform Xperiome™ to help the pharmaceutical industry deliver innovative new therapies faster and smarter.

London, UK, August 4 2020 – Raremark® , the leading online patient community in rare disease,  has today launched its patient-powered knowledge platform Xperiome™ to help the pharmaceutical industry deliver innovative new therapies faster and smarter.


The Xperiome platform expands on Raremark’s vision of a world in which all rare diseases are treated by connecting everyone affected by rare diseases through shared, lived experiences, regardless of diagnosis, while providing customized patient journeys specific to their disease indication.


Harnessing Raremark’s over 11,000 active patients and caregivers, Xperiome brings together everyone affected by rare conditions such as idiopathic pulmonary fibrosis, myasthenia gravis, and urea cycle disorder. By using the Xperiome platform, pharmaceutical companies can recruit and retain hard-to-reach patients in research studies, improve go-to-market strategies and evaluate the effectiveness of new treatments in a real-world setting.


“The missing puzzle piece is often the patient perspective, especially in rare disease, where patients are so much harder to find,” said Alex Garner, Chief Operations Officer. “The Xperiome platform enables pharmaceutical companies and contract research organizations to connect with these hard-to-reach communities and uncover key insights that make the drug development process smarter.”


The Xperiome platform has been created using Raremark’s deep domain expertise in drug development, machine learning and behavioral science. It is a growing knowledge base of patient experiences built by people affected by rare diseases, which provides a 360 degree view of rare patient journeys and allows community members to share patient-orientated guidance to researchers based on their real-world lived experiences.


Pharma companies can leverage the Xperiome platform throughout drug development and commercialization to connect with the right patients at the right time, complete missing datasets and unlock real-world insights.


For more information about the Xperiome platform, visit: https://xperiome.com/

About Raremark

Raremark builds research networks of rare disease patients and their families, providing the pharmaceutical industry with access to anonymized and aggregated patient data unavailable elsewhere, supporting clinical development, accelerating speed to market and evaluating the effectiveness of new treatment. Raremark is headquartered in London, UK with US offices in Dallas, TX and Cambridge, MA.

Get in touch

Interested in working with us? we’d love to hear from you. Please use the form below to provide us with a few details and we’ll get back in touch with you.


All fields required
Maximum 300 characters

United States office

Five Cowboys Way

Suite 300

Frisco TX 75034

+1 972-382-7227

United Kingdom office

Kemp House

152-160 City Road

London EC1V 2NX

+44 20 3920 9880