Xplore RARE-X

Huma and RARE-X partner to accelerate research for 9,500 rare diseases

Huma, Europe’s fastest-growing health technology company1, is partnering with the non-profit patient advocacy group RARE-X, which runs a collaborative patient-powered data collection platform for global data sharing and analysis to accelerate treatments for rare disease.

RARE-X’s federated data platform will pair with Huma’s decentralized clinical trials platform, complete with remote monitoring and digital biomarkers. Together, they will work closely with researchers, drug developers, and patient communities to gather data from anywhere in the world and make it easier for patients and their families to share data with researchers. 

Nicole Boice, Founder and CEO of RARE-X, said: “Most patients with rare diseases want to be involved in research, but they struggle to gather research-ready data, structured and safely made accessible to researchers, that could lead to real breakthroughs. Huma’s ability to gather real-world, patient-generated data from people wherever they are, is relevant for rare disease patients because it helps breakdown barriers to participation. We will have much richer information that reflects patients’ quality of life, such as how they slept or their mood that day. These are the areas that can really make a difference for patients.”

Medical research can be overly reliant on the data from the drugs, or the lab, particularly when there are few people with lived-experience of an illness” said Patricia Bradley, Huma’s US Head of Commercial. “We need to understand real-world experiences, and our platform connects patients who might not otherwise be able to participate. We can help RARE-X advance their critical mission and, together, we can make a real difference to patients, their communities and families by helping them live longer, fuller lives.”

Boice added, “This combination of patient-generated and health system-generated data will aid more researchers studying rare diseases. This collaboration removes barriers for research and creates new ways to understand these diseases and, ultimately, find treatments.”


About Huma

Huma is a global health technology company that exists to help people live longer, fuller lives. Our modular platform powers decentralized care and research, including remote patient monitoring, perioperative support, companion apps, decentralized clinical trials and more. We use digital biomarkers, predictive algorithms and real-world data from continuous patient monitoring using mobile devices to create hospitals at home and decentralized clinical trials. Our ‘hospitals at home’ help care for Covid-19 patients across the UK’s NHS, Germany, and the UAE — evidence shows they can double clinical capacity, reduce readmission rates by a third, and reduce costs whilst providing safe, high-quality care. We offer Covid-19 digital services, not-for-profit, to national governments in support of the fight against the pandemic and have shipped over a million devices that complement our ‘hospitals at home’ to help power them. We are using this same technology platform to support Covid-19 vaccine initiatives and research projects in the US and EU. For more information, visit www.huma.com

About RARE-X

RARE-X is a 501(c)(3) patient advocacy organization focused on supporting the acceleration and development of life-altering treatments and future cures for patients impacted by a rare disease.  Enabled by best-in-class technology, patients, researchers, and other technology vendors, RARE-X will gather structured, fit-for-purpose data to share broadly, benefitting from 21st-century governance, consent, and federated data sharing technology.  RARE-X is building the largest collaborative patient-driven, open-data access project for rare diseases globally. For more information, visit www.rare-x.org


Media Contacts:


Tom Hume, Marketing Communications


Share on Facebook
Share on Twitter
Share on LinkedIn
Share via Email
Translate »