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Rare Genomics Institute (RGI) is an international non-profit that provides access to cutting edge research technologies, physicians, and scientists across the globe. By providing an expert network and an online crowdfunding mechanism, RGI helps families pursue personalized research projects in diseases not otherwise studied. We bring together scientists who share our passion for helping rare disease patients and leverage the crowdfunding capabilities of the Internet to bring the hope of a cure to our patients.
1) Unique Diagnostic Opportunities: We strive to connect families, physicians, and scientists who would otherwise not have found one another through our "RGI sites". An RGI site consists of a research facility that is able to perform DNA sequencing and a clinician and/or scientist that can interpret the data from sequencing.
2) Individual attention from patient advocates: Once you apply to RGI, you are assigned a patient advocate that will work with you to identify the site that best matches your needs all the way through sequencing and results. We will be with you every step of the way!
3) Funding Opportunities: Genome sequencing can cause a significant financial burden for many families. To ensure that a family is not excluded from this technology due to lack of funds or insurance, we have created an individualized crowdfunding platform that allows families to fundraise for their child.
4) Passionate expert volunteers: RGI is a completely volunteer-based organization, and almost all of our volunteers have full-time positions outside of RGI. Several of us have pursued, or are pursuing, graduate degrees in science, medicine, business, and law and we really care about the issues affecting families with rare genetic disorders. This is why we dedicate time to RGI.
- Adeline Shen
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