Huma Enters Partnership with RARE-X to Accelerate Rare Disease Research

Rare Daily Staff

Huma, Europe’s fastest-growing health technology company, 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.

“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, which could lead to real breakthroughs,” said Nicole Boice, founder and CEO of RARE-X “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.”

Boice is founder and board member of Global Genes, publisher of Rare Daily.

Patricia Bradley, Huma’s U.S. Head of Commercial said that medical research can be overly reliant on laboratory or drug data, particularly when there are few people with lived experience of an illness.

“We need to understand real-world experiences, and our platform connects patients who might not otherwise be able to participate,” she said.