About Us
Patient advocacy leaders will drive the next generation of rare disease breakthroughs
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, their families and disease communities globally.
Mission
Grow the ranks of patient advocacy leaders who will drive the next generation of rare disease breakthroughs. We equip rare disease advocates with the tools, training, and trust to lead – to activate communities, advance research, and widen the drug development pipeline.
Our Intended Impact
The path toward every rare disease treatment begins with patient leadership. Science accelerates when patient advocates lead. Systems change when the lived experience is central. Breakthroughs happen faster when advocates drive the process.
Our Story
Global Genes was founded in 2008 to help build and unite the rare disease community. For almost two decades, Global Genes has been dedicated to connecting, empowering and inspiring the rare disease community.
Today’s patient advocates are leading in ways that weren’t possible even 10 years ago. Advances in therapy development, precision medicine and social media have laid the foundation for this sea change. Patient advocates are leading because of their personal urgency. Global Genes’ updated mission is to equip these heroic patient advocates, and help them develop vital ecosystems to achieve critical progress.
Patient leadership accelerates science, changes systems, and drives breakthroughs more quickly.
Global Genes Programs
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
Global Genes is an umbrella non-profit
patient advocacy organization in rare disease.
Global Genes Foundational Beliefs
Global Genes connects, educates, and empowers the rare disease community through shared values and determination. We understand the isolation and confusion of rare diseases and unite patients and advocates to take action and thrive.
Purpose of Umbrella Organizations
An umbrella organization provides support across a category of diseases rather than focusing on individual conditions. As a rare disease umbrella organization, we support patients and advocates across all diseases through educational programs, resources, and tools. This model is particularly vital for ultrarare and newly identified diseases that often lack dedicated organizations or established communities.
Our volunteer-driven, community approach shares best practices and skills through collaboration. Volunteers can participate in events, contribute content, join discussions, or speak at our programs.
How We Serve
* Provide free or low cost educational tools and resources
* Offer access to experts and one to one support
* Secure funding for much of what we develop, enabling Global Genes to make our resources, tools, other content and events available to patients and advocates at reasonable or no cost
Community Model
We operate on a ‘community of sharing’ philosophy, with expert advisors from advocacy, research, and biopharma donating time and talent. Built on ‘paying it forward,’ we continue the tradition of volunteers helping others while identifying new voices to share experiences and benefit the rare disease community.
Impact at a glance
Together we can change lives.
Distinct types of Rare and Genetic Diseases
Million People Suffer From a Rare Disease Globally
of Rare Diseases Lack an FDA Approved Treatment
Rare Diseases Start in Childhood
The Average Time it Takes for Rare Patients to Receive an Accurate Diagnosis https://everylifefoundation.org/delayed-diagnosis-study/
For a detailed dive into the impact Global Genes provides:
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:
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