Access global knowledge bases and advocacy networks for genetic health.
Rare is not Scarce
A condition is "rare" when it affects fewer than 1 in 2,000 people.
300M+
GLOBAL PATIENTS
Equivalent to the 3rd largest country in the world.
72%
GENETIC ROOT
The vast majority of rare diseases originate in the DNA.
5 Yrs
DIAGNOSTIC ODYSSEY
Average time to receive an accurate diagnosis.
Clinical Knowledge Base
Trusted global genomic databases and clinical reference standards
Orphanet
The definitive global resource for rare diseases and orphan drugs, offering a comprehensive nomenclature, an encyclopedia of conditions, and a directory of specialized care centers and diagnostic laboratories across 40 countries.
ClinicalTrials.gov
A centralized registry and results database of publicly and privately funded clinical studies conducted around the world, managed by the U.S. National Library of Medicine to provide transparency in medical research.
GARD (NIH)
The Genetic and Rare Diseases Information Center (GARD) provides the public with free, easy-to-understand information on rare and genetic conditions, translating complex scientific data into actionable resources for patients and families.
NORD
The National Organization for Rare Disorders (NORD) is a primary advocacy organization providing patient assistance programs, education, and research grants while lobbying for legislation that benefits the 30 million Americans with rare diseases.
Global Genes
A leading international non-profit that builds and unites the rare disease community by equipping patient advocates with tools, training, and resources to accelerate research and widen the drug development pipeline.
RDCRN
The Rare Diseases Clinical Research Network (RDCRN) facilitates collaborative research through a network of 20+ consortia, focusing on natural history studies, clinical trial readiness, and the training of new investigators in the field.
Knowledge is Power
Unlock the data hidden in your DNA. Understanding your carrier status is the most powerful step you can take for your family's future health.