Who We Are
We are a non-profit organization that gives families afflicted by rare genetic disorders access to genome sequencing and expert analysis. 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.
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 501(c)(3) not-for-profit 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.