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

Supporting Next-Generation Advocacy

Provide patient advocates with a continuum of services to accelerate their path from early support and awareness through research readiness, using a collaborative approach that involves biopharma, researchers and funders, with data as a central core.

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.

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

Global Genes is known as an umbrella non-profit
patient advocacy organization in rare disease.

Global Genes Foundational Beliefs  

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 to thrive. We understand the overwhelming experience of the unknown,  the confusion, and the feelings of isolation from rare diseases all too well. And we know we aren’t alone. That’s the reason Global Genes was born – to connect, educate, and empower those in the rare disease community to flourish and become activated.

Purpose of Umbrella Organizations

An umbrella organization is a group/non-profit under which support is provided across a category of diseases vs an individual disease.  Global Genes is a rare disease umbrella advocacy organization that supports rare disease patients and advocates [regardless of diseases] as individuals or their organizations through educational programs, resources and tools. 

As a non-profit rare disease umbrella advocacy organization working cross-disease Global Genes has always worked with volunteers and advisors who are passionate about improving the outcomes for those facing rare diseases. They have donated time and talent over the years to support our growing community of patients and advocates, with the intention of making the path a little easier for those that follow.  This model and community driven approach works best when we share best practices, skills and support.  It is the foundation of what Global Genes has stood for – collaboration and giving back. We are also grateful to those that have benefited from this approach, stepping into a similar role of giving back and sharing their experiences as they become valuable to others.

Just a few of the ways you can volunteer your time with Global Genes are to participate in meetings/virtual events, contribute written content resources or webpages you have created, answer surveys, join online discussions, promote important resources and tools to your networks and communities, or speak at one of our events.  There are a plethora of ways to engage with Global Genes.

Ways in which we serve

* We provide educational tools and resources at no cost. 

* We offer access to experts and one to one support help to the rare disease advocates who need them. 

* We find and secure the financial support for most of what we develop, providing opportunities for Global Genes to make all of our resources, tools, other content and events available to patients and advocates at little to no cost. This is a model that we are committed to.

Intentions of our advisors, partners and collaborators

* Global Genes’ work is based on a ‘community of sharing’ model.  

* We look to experts in Advocacy, Research, Drug Development and Biopharma to donate their time and talent to the programs we bring forward.

* We are grateful to the many expert advisors, partners and collaborators that have been passionate about donating their time and talent, to the benefit of our programs, partners and patient advocates.

Paying it forward

* We have all received the benefits from the work of so many other volunteers who have come before us. 

* We recognize that one of the best qualities of the rare disease advocate community is the willingness to share and learn from one another.

* We are always looking to identify new people, with new experiences to share with others.  

* Global Genes has been built on the ‘pay it forward’ philosophy, and we recognize the importance of continuing forward with this model.

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

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: