Rare Genomics Institute Launches the RareWear Program
/Global initiative connects rare disease patients with medical device technology providers to better monitor and manage disease conditions
LOS ANGELES, CA; February 25th, 2020 -- Rare Genomics Institute (RG), a non-profit patient advocacy group for rare disease patients, has launched the RareWear program. This philanthropic global program establishes a partnership ecosystem connecting rare disease patients with medical technology companies who can provide these patients with devices to better manage and monitor their conditions. The program will officially start matching patient applications on February 29th, 2020 marking International Rare Disease Day.
Joining the first phase of the launch are three medical device technology providers - Bodimetrics, Biotricity, and Strados Labs. Through these partners’ generous contributions, rare disease patients will have the opportunity to apply for and receive free device technologies, enabling them to better monitor and manage their conditions. “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” says Jimmy Lin, Founder of Rare Genomics. 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.
Dr. Albert Rizzo, Chief Medical Officer of the American Lung Association, expects Strados Labs’ device to allow “providers to better educate and inform patients on disease self-management and preventive health”. The RareWear partners view this program as an opportunity to improve quality of life for the patients. “Our company is dedicated to this wonderful mission and the partnership will allow us to directly impact rare disease-afflicted individuals in need of monitoring solutions for blood oxygenation and body vitals” says Mark Goettling, Chief Financial Officer of Bodimetrics. The CEO and Founder of Biotricity Inc., Dr. Waqaas Al-Siddiq, adds “working with RareWear is part of Biotricity's focus on expanding its current deep data sets to drive additional insights for predictive monitoring in rare disease patients.”
Additionally, Rare Genomics has extended its outreach to the rare disease patient community by collaborating with Inspire, a patient social network. “Patients with rare disease and their caregivers are central to our mission, and our goal is to help them through their health journeys," says Inspire CEO Brian Loew. "Inspire’s platform supports over 700,000 rare disease patients across thousands of conditions, and, with RG, we will help patients, providers, and medical device companies better understand rare diseases.”
In the future, RareWear will continue to increase program scope. “We plan to expand RareWear both in terms of partnerships and technology to further meet the needs of rare disease patients” says Shoman Kasbekar, Director of the RareWear Initiative. “We are excited to work with companies developing devices in the body vitals monitoring, activity tracking, sleep tracking, seizure monitoring, pain management, and side effect tracking spaces, among others.”
Patients in need of medical device technologies can apply to be registered in the program here. For more information on the RareWear program and the use of wearable technologies in the rare disease space, RG invites rare disease patients, the medical community, and medical technology companies to view our website here. We also invite medical technology groups interested in partnering with the Rare Genomics Institute in this effort to connect with us here.
About the Rare Genomics Institute
The Rare Genomics Institute (RG) was founded in 2011 to fill the health care gap for undiagnosed rare disease patients and supporting research in rare diseases. RG helps rare disease patients find a diagnosis, treatment, and pathway to a cure by individualized access, coordination and execution of genetic sequencing and research services with RG and its affiliates.
RG also supports rare disease advocacy by fostering an online community of rare disease patients, and supporting rare disease research through a yearly grant competition. We hope that these efforts push science and care forward to meet the needs of the patients affected by rare diseases.
About BodiMetrics
BodiMetrics is dedicated to developing and delivering innovative devices that harness the power of technology to improve the wellness of patients wherever they may be. Bodimetrics is empowering consumers with products, services and solutions that allow them to take charge of their healthcare, lower overall cost, and improve their well-being. Bodimetrics devices enable the non-invasive capture of vital sign metrics (ECG, Heart Rate, SpO2 with Pleth Waveform, Temperature, and include functions for Sleep Apnea assessment, Stress Reduction, and Fitness with supporting metrics). For additional info please visit www.bodimetrics.com. About Biotricity Inc.
Biotricity (OTC: BTCY) is a remote patient monitoring company with a platform that combines real-time monitoring, global connectivity, big data, and clinically relevant data. The company's first product suite is catered at complex cardiac patients with a vision to move into other disease categories by harnessing its flexible platform. To learn more, visit www.biotricity.com .
About Strados Labs
Strados Labs has developed the first system that objectively measures cardiopulmonary health, allowing providers to remotely monitor at-risk patients using a novel biosensor and clinically validated analytics platform. With the Strados Labs system, clinical teams can access and monitor real-time changes in lung health so they can intervene to improve patient outcomes while reducing readmissions. For more information please visit www.stradoslabs.com. About Inspire As the leading social network for health, Inspire offers community partnership opportunities for 501(3)c non-profit organizations, as well as patient-centric insight and engagement solutions for the life science and healthcare industry. With over 100 national advocacy organization community partners and 2 million patient and caregiver members across more than 200 condition-specific support communities across oncology, chronic diseases, neurological disorders, and rare diseases, Inspire works closely with partners and customers to help accelerate medical progress through a world of connected patients.
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Press Contact
Yegor Kuznetsov +1-703-209-0167 or email yegor.kuznetsov@raregenomics.org