About Us

What We Represent

Global Genes was born to connect, empower and inspire the rare disease community.

Hope. It’s in our genes.™

Global Genes is a 501(c)(3) non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally.

Vision

We envision a globally connected community equipped to eliminate the challenges of rare disease.

Our Story

Global Genes’ story began with our loved ones. We are the friends, family and supporters of patients close to us who are affected by rare disease. We understand the confusion, the overwhelming experience of the unknown and the feelings of isolation all too well. And we know we aren’t alone. That’s the reason Global Genes was born – to connect, empower and inspire the rare disease community.

Mission

Global Genes provides hope for the more than 400 million people affected by rare disease around the globe. We fulfill our mission by helping patients find and build communities, gain access to information and resources, connect to researchers, clinicians, industry, government, and other stakeholders, share data and experiences, stand up, stand out, and become effective advocates on their own behalf.

Our Passion

At Global Genes, we’re guided by our values – we call them our passion. Our team is united by our determination to support the rare disease community and provide what patients and advocates need to take action and thrive.

We understand the confusion, the overwhelming experience of the unknown and the feelings of isolation all too well. And we know we aren’t alone. That’s the reason Global Genes was born – to connect, empower and inspire the rare disease community.

Impact at a glance

Together we can change lives.

10,000+

Distinct types of Rare and Genetic Diseases

400

Million People Suffer From a Rare Disease Globally

3 of 10

Children with a Rare Disease Won’t Live to See Their 5th Birthday

1 of 2

Patients Diagnosed with a Rare Disease is a Child

For a detailed dive into the impact Global Genes provides,

Download the 2020 Annual Report

Explore the Infographic

Global Genes in the Press

Find Global Genes’ latest news and press releases. For Media Requests Contact Us

Career Opportunities

Are you a dedicated advocate interested in building awareness and educating the global community?  Join our team!

 

View Open Opportunities

Infographic of Global Genes’ Impact on the Rare Disease Community

Infographic of global genes impact

Financials

Audited Financials

Global Genes relies upon the support of generous donors to fulfill our mission. We are committed to remaining true to our mission while remaining transparent and providing the greatest impact to the rare disease community.

View audited financials by year: