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No Disease Left Behind: Redesigning the Genetic and Rare Disease (GARD) Program to Expand Accessibility and Interoperability

Improving consumer’s access to information on genetic and rare diseases

Executive Summary

The Genetic And Rare Diseases (GARD) Program was established in 2002 as the principle public resource for information on rare diseases. Recent search engine optimizations resulted in a doubling of website traffic and inquiries to its contact center seeking individualized support. The scientific and clinical space in rare diseases are similarly seeing rapid growth particularly with the advent of successful gene therapies and new research for previously untreatable or poorly understood diseases. Our project focuses on modernizing the GARD Program by improving access to reliable, accurate information and interoperability with informatics-based resources to ensure that GARD continues to be relevant as data science evolves.

Team Members

Eric Sid (team lead), NIH
Christine Cutillo, NIH
Alice Chen, NIH

Milestones

October 2018: Project selected into the HHS Ignite Accelerator
March 2019: Time in Accelerator Began
June 2019: Time in Accelerator Ended