What is unique about RG?

1. Unique diagnostic opportunities: We connect families, physicians, and scientists who would otherwise not have found one another through our “RG sites”. An RG 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 RG, 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: RG has a significant volunteer-base, and almost all of our volunteers 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.

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.

Why We Do This

“Our experience with RG has been fantastic with a proactive and dedicated team, from when we first communicated 3 years ago, you have never stopped.” - Rebeca Bentolila, Mother

“Now we know, we have solid evidence. It’s not just based off different tests. We have something that is directly related to him and it’s helped him dramatically. Now that we know what is wrong with our daughter, which routes we need to go. Thank you, I can’t say it enough.” - Jonathan Van Brocklin, Father

“Thank you for persistently pushing this genetic testing process along. We have finally got a diagnosis for our son after 9 years of not knowing. Your work truly mattered.” - Janet Wong, Mother