Get a glimpse of the people behind Global Genes
Join the Global Genes team
a partnership committed to improving the lives of people with rare diseases
Learn how organizations can support Global Genes financially
Global Genes’ latest press releases
a members only, global community of non-profit organizations and support group
Free, personalized service for patients, caregivers, and healthcare providers
Search RARE Daily, podcasts, videos, blogs, stories, toolkits, and reports
Browse the latest news, articles, and blog posts from Global Genes.
These RARE facts show the impact of rare disease
Search for a particular rare disease, helpful resources, and clinical trials.
Diseases that are in the process of being officially classified.
Learning family health history can help find out if a disease runs in a family
Your involvement in driving understanding, discovery, and treatments for rare disease
Resources to advance your research
Advisory program that assesses therapeutic landscape for a disease and develops roadmap recommendations
Platform for collecting, structuring and sharing rare disease data in collaboration with PAGs
Leveraging RARE-X in sponsored research projects and consortia
Removing barriers for data collection and sharing for individuals living with Pompe disease
Creating clinical trial ready populations in central disorders of hypersomnolence (CDoH) and identifying meaningful outcome measures
Creating clinical trial ready populations in the ocular disease community and identifying meaningful outcome measures
A collaborative and competitive environment to use patient-provided data to solve unknowns
Browse upcoming Global Genes hosted events and register
RARE Advocate Development (RAD) 3 day educational event on development of CNS therapies
A year long virtual patient summit
Equipping advocates with knowledge, skills, and connections to advance therapy development
An annual observance to raise awareness for 400 million people affected by rare disease globally
Explore events hosted by communities, individuals, and other organizations outside of Global Genes
