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.

Our Vision

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

Our 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.

Global Genes opened our eyes to the world of both rare and genetic disease. They filled my family with information, new friends and most importantly, hope. We consider the whole Global Genes community part of our family and feel privileged to know them. – Lisa, Matt & Emily Muller

Our Impact

Download our 2020 Annual Report