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.