About Us
Our Mission
Rare Genomics Institute (RG) is a dedicated non-profit organization focused on addressing the significant unmet needs of patients and families affected by rare diseases worldwide. Through collaborative efforts, we connect patients with advanced tools such as next-generation sequencing, as well as digital health researchers and cutting-edge medical devices. Additionally, RG works closely with various foundations and companies to offer valuable technology grants under the BeHEARD program and supports ongoing bioinformatics research to drive innovation and improve patient outcomes.
Our Principles
A Culture of Caring and Individual Focus
At RG, compassion drives everything we do. We know the challenges families face when navigating rare diseases. That's why we prioritize personalized care—connecting each patient to resources tailored to their unique genetic journey. Because no two rare diseases are the same, we focus on the individual, helping doctors identify the best path forward for each family.
Dedicated to Overcoming Barriers
We believe every family deserves access to answers—regardless of background or financial status. Rare diseases know no boundaries, and neither do we. We work alongside patients and their families, providing the tools, knowledge, and support they need to better understand their condition. Every patient deserves more out of life.
Organizational Transparency
We are committed to the responsible stewardship of every dollar raised. Our donors place their trust in us, and we honor that through accountability, transparency, and measurable impact. Every contribution directly supports our mission: helping families obtain vital genetic sequencing data to better understand rare diseases and fuel hope for the future.
What Makes Us Unique
Bridging Science and Families
We connect families with rare genetic diseases to research facilities and expert clinicians through our unique RG sites. These collaborations make DNA sequencing and expert interpretation accessible to families who might never have found these resources otherwise.
Personal Patient Advocacy
Every family is paired with a dedicated patient advocate who guides them through the entire process—from choosing the right research site to understanding sequencing results. You're never alone in this journey.
Community of Passionate Experts
Our team is powered by highly skilled volunteers—scientists, doctors, business, and law professionals—who are driven by a shared mission to help families affected by rare genetic disorders.