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.

We know this is just the beginning of what we can achieve together.

Since 2008, Global Genes has:

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

We are purposeful in our work and actions to achieve the best possible outcomes for rare disease patients and advocates.
We believe we can influence the most positive change by working as one. We are collaborative and build the bridges needed to advance the best possible outcomes for rare disease patients.
We care about the patients and advocates we have the opportunity to reach. We want to provide the best possible experience and the individual support to meet their needs, responding to what they need and when.
We are all champions of hope. Hope is at our core and the fuel behind everything we do every day, in every way.
We are relentless in our pursuit to influence positive change. We set and achieve aggressive goals to serve, engage and mobilize a global community of rare disease patients and advocates.

Our Purpose

Global Genes’ mission is to connect, empower and inspire the rare disease community.


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.


Our Possibility

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