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.
Distinct types of Rare and Genetic Diseases
Million People Suffer From a Rare Disease Globally
Children with a Rare Disease Won’t Live to See Their 5th Birthday
Patients Diagnosed with a Rare Disease is a Child
For a detailed dive into the impact Global Genes provides,
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
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:
