Rare Genomics Institute Launches Initiative to Provide Free Monitoring Devices to Rare Disease Patients

Rare Daily Staff

The Rare Genomics Institute said it has launched the RareWear program, a global philanthropic initiative to connect rare disease patients with medical device technology providers to better monitor and manage rare disease conditions.

Three medical device technology providers—Bodimetrics, Biotricity, and Strados Labs—are participating in the initial phase of the program. Rare disease patients will have the opportunity to apply for and receive free device technologies to better monitor and manage their conditions. The devices do such things as monitor vital signs, activity tracking, sleep tracking, seizure monitoring, and provide pain management among other things.

“Traditionally, the application of medical device, monitoring, and wearable technology to manage rare diseases has been an underserved space, and this initiative to bring patients and technology providers together fills a much needed gap,” said Jimmy Lin, founder of Rare Genomics, which works to fill the healthcare gap for patients with undiagnosed rare conditions. “The partnerships with current medical device providers will allow patients with cardiac, respiratory, neuromuscular, and other conditions, as well as their families and clinicians, to monitor metrics relevant to their disease area and benefit from the real-time information these devices provide.”

Rare Genomics said it is working to expand the scope of the program both in terms of technology partners and its outreach to patients through collaborations like the one it has for the program with Inspire, a patient social network with more than 700,000 rare disease patients.

Patients in need of medical device technologies can apply to be registered in the program through the Rare Genomics site.

Photo: Jimmy Lin, founder of Rare Genomics