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

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orpha.net

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.

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clinicaltrials.gov

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.

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nih.gov

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.

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rarediseases.org

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.

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globalgenes.org

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.

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nih.gov

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.

Empower Your Decisions

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.

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