Who We Are

What is the 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 for 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 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 and guide you all the way through sequencing and results. We will be with you every step of the way!

3) Funding Opportunities: Genome sequencing can be 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. Most of us hold, or are pursuing, graduate degrees in science, medicine, business, and law and we truly 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 dedicated to studying these conditions. Consequently, patients are left with neither hope of a cure nor understanding of the disease.

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 have 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.


Help fight rare diseases.
Donate now and help bring the hope of a cure to a rare disease patient.
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Strength in Numbers
Our research sites include top universities and research institutes across the country.
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Apply as a Patient.
Apply to become a Patient. Contact Rare Genomics and we’ll send you an application.
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Rare Genomics Institute

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