Press Releases
Rare Genomics Institute and BodiMetrics Partner to Provide Rare Disease Patients with Wearable Devices
Washington, D.C. Aug 2 2023. The Rare Genomics Institute (RG) is pleased to announce that Bodimetrics, a medical device company that specializes in wearable ring oximeter that is accurate in all skin tones, will continue their support of the RG RareWear program by donating 40 circul+ smart rings to allow patients with cardiac, respiratory, 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 Institute and Amazon Web Services Collaborate to Help Rare Disease
Washington, D.C. March 2, 2022. The Rare Genomics Institute (RG) today announced it is receiving support from Amazon Web Services (AWS) to enhance its RareShare website. RareShare is a unique social hub serving hundreds of rare disorder communities since 2008, allowing direct exchange of information among patients, families, research organizations, and healthcare professionals to improve the lives of those affected.
BridgeBio Awards Grant to Rare Genomics Institute to Help Rare Disease Patients
The Rare Genomics Institute (RG) today announced it has received a grant from BridgeBio Pharma, a clinical-stage biopharmaceutical company founded to discover, create, test and deliver meaningful medicines for patients with genetic diseases and cancers with clear genetic drivers. RG, a non-profit that makes cutting-edge research technologies and experts accessible to rare disease patients, will use the funds to expand its programs supporting rare disease patients.
Rare Genomics Institute BeHEARD Challenge Awards 21 Rare Disease Grants
Washington, D.C. August 6, 2020. The Rare Genomics Institute (RG) is delighted to announce the winners of the 2019-2020 BeHEARD (Helping Empower and Accelerate Research Discoveries) Rare Disease Science Challenge, a global competition that offers rare disease researchers, who traditionally have difficulty attracting funding, grants of the latest life science innovations and technologies. This unique biotechnology contest allows companies to contribute their technology to make a difference for the rare disease community.
Rare Genomic Institute Announces BeHEARD – Annual Rare Disease Science Technology Grants Challenge – The competition is open globally to foundations, researchers, and doctors
By BioSpace
The Rare Genomics Institute (RG) announces the BeHEARD (Helping Empower and Accelerate Research Discoveries) Initiative, an annual rare disease science challenge providing technology grants for rare disease research. The RG-hosted contest is aimed at accelerating rare disease research and offering new options for millions of patients suffering from ailments that lack effective treatments.
Rare Genomics Institute Marks International Rare Disease Day With New "RareWear" Program
The Rare Genomics Institute, a nonprofit patient advocacy group, announced it will launch its new RareWear program, marking 2020’s International Rare Disease Day. The program works with patients who have rare diseases to connect them with medical device providers specializing in technology for monitoring and managing conditions. Once matched, patients will receive a device for free from medical device technology providers Bodimetrics, Biotricity, or Strados Labs.
Rare Genomics Institute partners with Dante Labs to help children and adults who suffer from rare diseases
Los Angeles C.A., February 28, 2019 – Rare Genomics Institute (RG) today announced a partnership with Dante Labs, an Italy and US-based diagnostic laboratory. RG is an international non-profit that gives rare disease patients access to state-of-the-art genomics sequencing technology, connections to scientists and researchers and philanthropic opportunities. Dante Labs is a genetic testing company specialized on whole genome sequencing and rare diseases. Through this partnership, Dante Labs has agreed to provide pro-bono Whole Genome Sequencing to select patients from Rare Genomics. Their test called, Whole Genome Sequencing (Full DNA Analysis), analyzes 100% of the DNA and provides personalized reports based on the patient’s medical history and symptoms.
Genomenon Partners with Rare Genomics Institute, Begins with Philanthropic Donation
Mastermind Genomic Search Engine Allows Rare Genomics Team to More Quickly Analyze Patient Data for Diagnosing Rare Diseases.
ANN ARBOR, MICHIGAN – October 16, 2018 - Genomenon announced today that they will donate Mastermind Genomic Search Engine licenses to the entire team of clinical scientists at Rare Genomics Institute to accelerate their work for patients with rare diseases.
Rare Genomics Institute Announces the winners of the 2018 BeHeard (Helping Empower and Accelerate Research Discoveries) Rare Disease Science Challenge
The Rare Genomics Institute (RG) is delighted to announce the winners of the 2018 BeHEARD (Helping Empower and Accelerate Research Discoveries) Rare Disease Science Challenge, a global competition that offers rare disease researchers, who traditionally have difficulty attracting funding, grants of the latest life science innovations and technologies. This unique crowdsourced biotechnology competition allows companies to contribute their technology to make a difference for the rare disease community.
Rare Genomics Institute and Organization for Rare Diseases India are recipients of Sanofi Genzyme’s PAL Award 2016 to Develop Rare Disease Online Learning Modules
Rare Genomics Institute (RG) and the Organization for Rare Diseases India (ORDI) announced today that they are one of the recipients of Sanofi Genzyme’s 6th annual Patient Advocacy Leadership (PAL) Awards for 2016. RG and ORDI have won financial support for the development and dissemination of specialized Rare Disease online training modules.
Rare Genomic Institute Announces Rare Genomics Task Force (RGTF)
The Rare Genomics Institute (RG) has announced a new division – Rare Genomics Task Force (RGTF). It will be tasked with providing scientific information and support for patients with rare diseases. These efforts include but are not limited to conducting research reviews, writing reports for patients, identifying renowned experts who can help with projects, and connecting experts with rare disease patients. RGTF recently started a free and publicly accessible platform that is currently running through email communication.
Rare Genomic Institute Announces BeHEARD – Annual Rare Disease Science Technology Grants Challenge -- The competition is open globally to foundations, researchers, and doctors
The Rare Genomics Institute (RG) announces the BeHEARD (Helping Empower and Accelerate Research Discoveries) Initiative, an annual rare disease science challenge providing technology grants for rare disease research. The RG-hosted contest is aimed at accelerating rare disease research and offering new options for millions of patients suffering from ailments that lack effective treatments.
Rare Genomics Institute Joins the Global #GivingTuesday Movement to Help People Affected by Rare Diseases
Washington, D.C, December 1, 2015 - Rare Genomics Institute (RG) has announced today it will join #GivingTuesday, a global day of giving that harnesses the collective power of individuals, communities and organizations to encourage philanthropy and to celebrate generosity worldwide. The international nonprofit organization will use the raised funds to help people affected by rare disorders - helping them connect with research, diagnoses, and treatments.