Our Commitment to
Health Equity
Global Genes understands the challenges and obstacles when it comes to quality care and access to the latest research and medical treatments. We are here to help.
At Global Genes, we are dedicated to addressing health inequities in the rare disease community. With over 30 million individuals in the United States and more than 300 million worldwide affected by rare diseases, it is critical to ensure, regardless of background, there is equitable access to rare disease care and support.
Understanding Health Equity in Rare Disease
Health equity means that everyone has a fair and just opportunity to be as healthy as possible. In the context of rare diseases, this involves recognizing and addressing disparities that arise due to factors such as race, ethnicity, gender, disability, socioeconomic status, sexual orientation, age, or geography. These disparities can lead to delayed diagnosis, limited access to treatments, and inadequate support systems for underrepresented populations.
Achieving health equity in the rare disease community requires collective effort. We invite advocates, patients, caregivers, healthcare providers, researchers, and industry partners to join us in this mission. Together we can create a more inclusive and equitable future for all individuals affected by rare diseases.
Join us in Championing Health Equity
Health Equity in Rare Disease
Reimaging a healthcare system that doesn’t just work for some…but works for everyone.
RARE Health Equity Report
Building a More Inclusive Rare Disease Community: this comprehensive report explores systemic barriers in rare disease care and offers actionable strategies to promote equity.
Read the RepotIdentity, Culture & Rare Disease
A discussion on how various aspects of identity influence the rare disease journey.
Watch NowRacial Equity Institute Workshops
Racial Equity Institute workshops for the Rare Disease Community: advocates diving into racism and inequities in our institutions and how they show up in the rare disease space.
Explore Workshops2025 Quick Guide Series
Addressing challenges in rare. Topics include navigating medical gaslighting, knowing the rights of your RARE child (or yourself), and more.
Explore Quick GuidesThe Diversity of Diversity
Watch and listen to a discussion on how diversity challenges vary across communities and potential solutions.
Watch NowHealth Equity Podcast Channel
Discover ways to close the health equity gap around the world.
Listen NowThe Health Disparities Podcast
This podcast features thought leaders in the world of equitable health, and highlights health disparities, social determinants of health, and community-led solutions.
Listen NowDisease, Distrust, Disparities and Direction
An exploration of the socio-political histories and traumas affecting American Indian and Alaska Native Communities from Global Genes’ Health Equity Summit.
10 Takeaways from the RARE Health Equity Forum
Key insights and strategies to address systemic barriers and promote inclusivity in rare disease care.
Read it NowBringing Health Equity & Positive Outcomes to Rural & Underserved Populations
Learn about challenges faced by rural and underserved communities in access rare disease care.
Watch NowRare Disease Diversity Coalition (RDDC)
The Rare Disease Diversity Coalition is dedicated to addressing the extraordinary challenges faced by historically underrepresented rare disease patients.
RARE Concierge
Those in the rare disease community may experience a variety of challenges with equitable access to care and support. Learn more about the health equity challenges someone in the rare disease community may experience and what resources are available.
Our Patient Services Guides are here to provide resources, information, and connections – to guide you on your rare disease journey. If you have specific questions about health equity for you or a loved one, the Patient Services team can find resources to help you.