My Nonprofit Reviews

The Rare Genomics Institute (RG) is an incredible organization focused on supporting undiagnosed rare disease patients. Since 2011, they have helped to bridge the health care gap for undiagnosed and rare disease families with clinical sequencing, genomic research, and alternative funding methods for sequencing. We hope through increased access to information, tools, and support systems that our patients can get them closer to diagnosis, treatment, and, one day, a cure. Our organization is run by dedicated teams of 244 volunteers who serve as patient advocates, researchers, and analysts. All of our teams strive to help our patients and families find a diagnosis. I have volunteered with RG for 6 years, and during that time, I have seen the organization grow and develop new teams and resources so that we can help our families in many ways. With the addition of each new team, I believe that are becoming even stronger organization driven to find our families answers. I am so grateful to be a part of such an organization and all of the incredible work that we do to help our families.