We take our work seriously and we like to have fun at the same time. Use this space to follow what’s keeping our team busy, what’s on our minds, and the results of our latest projects.
Learn about our sponsored, one-off and longitudinal research studies, and how we collect real-world data that’s not available from other sources.
This study aims to learn what people with sickle cell actually think about taking the newer sickle cell medications – Adakveo (crizanlizumab), Endari (L-glutamine), and Oxbryta (voxelotor) – and see how they compare with the older drug, hydroxyurea. This is not like other studies that may only focus on following doctors’ orders.
Read our perspectives on news and trends in rare disease, and how patients can be powerful agents of change in health.
August 2020Outsourcing-Pharma interviews Raremark on the launch of the Xperiome knowledge platform.
August 2020We share top 10 tips on engaging rare disease patients in clinical trials with the journal Clinical Researcher.
August 2020On the long road to realizing the full potential of artificial intelligence in health, exciting innovations are happening every day.
Discover how we’re making our mark in research and accelerating the development and reach of new treatments.
The Raremark community is made up of over 11,000 active patients and caregivers worldwide (as of July 31, 2020). The Xperiome platform powers this community of research-activated patients and caregivers, enabling partnerships with pharmaceutical companies working in respiratory disorders, hematology, metabolism, gastrointestinal disease, and immunology. We will continue to expand into additional therapeutic areas over time.
A pharmaceutical company commissioned Raremark to survey our sickle cell community to understand how people living with the condition handle their pain crises and hospital visits, and how they would feel about different ways to take or receive a new injectable medication.
A specialist pharmaceutical company commissioned Raremark to recruit a group of people living with pouchitis, a rare gastrointestinal condition, and to track how it affects their lives over a six-month period.
A specialty healthcare company developing treatments for rare diseases sought Raremark’s support for an early-stage pediatric trial program testing an investigational medicine in Sanfilippo syndrome.
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