Washington, D.C. August 11, 2016. Rare Genomics Institute (RG), is a 501(c)(3) non-profit organization that works alongside patients and their families. We provide them with the necessary tools, knowledge, and connections so that they can better understand the cause of their disease. Initially formed as a resource supporting patients’ access to genomic sequencing, RG is proud to announce a new personalized medical research platform (http://www.raregenomics.org/rare-reach/) for patients with rare and undiagnosed conditions. This platform centers around a consultative team of highly-trained volunteer scientists and medical experts who provide pro bono, insights and advice for each patient, by leveraging state of the art computational systems, cloud collaboration, and the unique expertise of RG’s global network of rare disease specialists. Patients may enroll in the new service directly via RG’s website. Upon acceptance, patients share their medical and genomic data with their personal RG team of highly-trained scientific analysts via the online data-sharing platform Patients Knows Best (https://www.patientsknowbest.com/). Upon completion of the service, patients receive a detailed scientific report summarizing the main findings about their unique condition, and suggested next steps. Depending on the complexity of each case, possible outcomes could vary from verification of previous sequencing information that could unravel new findings, to actionable outcomes such as connecting to advanced resources.
We are a team of scientists who believe in the potential of science to improve lives and work tirelessly to achieve this goal. Hear from our researchers:
“We are thrilled to announce our new initiative designed to bring more precise and personal knowledge to our patients in order to better understand their unique conditions. Our researchers are fulfilling a critical role in the patient care team that is distinct from that of physicians, genetic counselors, and sequencing services. Specifically, our initiative addresses the need for integrated in-depth analysis of rare disease patients’ unique genetic and medical data to enable deeper insights into their conditions. This translates to faster access to cutting-edge scientific solutions for our patients. We are committed to furthering the RG mission of propelling rare disease research forward in the hopes of bringing our patients closer to a diagnosis, treatment, or even cure.”--- Rajini R. Haraksingh, Ph.D., VP, RareREACH.
“The average RG patient has already seen at least 10 different physicians by the age of 3, and still is no closer to an answer. These families have been through tremendous emotional, physical and financial hardship, something that most people cannot begin to comprehend. The Patient Advocacy Team (PAT) at RG is intimately involved with patients, providing them with Individualized case management and coordination of CLIA-certified Genetic Sequencing services. On a case by case basis, we help patients identify appropriate funding opportunities. Our HIPAA-compliant patient data sharing policies ensure protection of patient privacy. PAT provides patients and their families a platform to gain access and push science to the limit to find an answer, because every disease will be on its way to a cure, no matter how rare.” --- Romina Ortiz, VP of Patient Advocacy and Policy at Rare Genomics Institute
To learn more about our journey and accomplishments, click here (http://www.raregenomics.org/).
We are always looking out for ways to help our patients and their families. Our RG partners (http://www.raregenomics.org/research-partners/) play a pivotal role in this herculean task. If you are interested in knowing more about RG’s services or partnering with us, please reach out to us: http://www.raregenomics.org/contact-us/.