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