You’re not alone.
When you’re here, you’re part of a globally connected community committed to eliminating the challenges of rare disease. Global Genes is committed to providing information, resources and connections to all communities affected by rare diseases.Find Your Resources
Empowering the Next Generation Rare Disease Advocate
Global Genes and RARE-X have been working toward the goal of empowering the next generation advocate both through their individual initiatives and their strategic partnership announced in 2021. In fact, RARE-X was born out of Global Genes after discussions with advocacy leaders, board members, partners, patients, and care partners, addressing a significant gap in access to tools, technology, and infrastructure.
Impact at a glance
Quick facts on the effects of rare diseaseLearn More Facts About Rare Diseases
Distinct types of Rare and Genetic Diseases
Million People Suffer From a Rare Disease Globally
Patients Diagnosed with a Rare Disease is a Child
Children with a Rare Disease Won’t Live to See Their 5th Birthday
Search the RARE List
For more resources, disease-specific information, and news, search our RARE List- an extensive list of rare diseases and rare conditions.Search Our Full RARE List
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We recommend…RARE Concierge – Patient Services
Send a support request and one of our Patient Services Guides will help you navigate the complicated and complex world of rare diseases. This service is free for patients, caregivers, and healthcare providers. We hope you’ll contact us so we can help.
We recommend…Learn and Find the Resources You need
Search our rare disease dictionary for information and resources on specific rare diseases.
We recommend…Join our community
Request an account to join our community portal.
We recommend…Read the Blog
Learn more about how Rare X is ‘Putting Real World Rare Disease Data in Researcher’s Hands.’
We recommend…Contacting us to reach and engage
Researchers and Research institutions interested in reaching out to patients for research purposes should contact us now to get started.
We recommend…the Global Advocacy Alliance page
Learn more about joining our Global Advocacy Alliance, its current members and their impact.
We recommend…Browse the resource hub
Browse information and resources.