Who is Rare Genomics Institute (RGI)?
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.
What is unique about RGI?
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.
Why We Care
An estimated 250 million people worldwide suffer from rare diseases. However, because each individual disease affects such a small number of people, little funding is used to study these conditions. Consequently, these patients are left with neither hope of a cure nor understanding of the disease. Each day is a living struggle for them to find a social identity in a world where they feel socially neglected and lost.
What We Do
Because most rare diseases are genetic in nature, we believe that genome sequencing has the power to help these patients in a way that conventional diagnostics cannot. However, most families affected with rare diseases are under financial strain, making access to such technologies difficult. To address this need, we act as a hub to help families raise funds and connect them to scientists who can help them.
How We Do It
We recruited a number of researchers and clinicians from top research institutions around the world. Through us, patients can gain access to world-class genomic sequencing and interpretation services. We also provide a fundraising platform to help patients raise funds.
Where the Funds Go
We are a nonprofit organization, funded primarily through the generosity of donors who believe in our cause. Donated funds go directly to supporting patient-specific research. We also raise funds through other means, such as grants from academic institutions, foundations, private donations, and other financial sponsors. We are incredibly thankful to everyone who has given us their support and made it possible for us to do what we do.