The Unlocking Life’s Code “Resource of the Month” for November 2015 is the online website for the Genetic and Rare Diseases (GARD) Information Center.
GARD offers a wealth of readily accessible online information about genetic and rare diseases sourced from NIH resources, medical texts, scientific journals, disease advocacy sites, and medical databases. Suitable for teachers, students, and the general public interested in rare diseases and their treatment – this resource provides dependable and up-to-date information.
The GARD site (https://rarediseases.info.nih.gov/gard) can be searched by entering the first letter of the disease of interest – with information available on literally hundreds of diseases. The web site also contains video tutorials on topics such as: “How to Find a Disease Specialist,” “How to Get Involved in Research,” “Tips for the Undiagnosed,” and Sobre GARD (español)." A separate section on “Teaching Resources” contains resources for educators’ use, to help students of all ages learn about rare diseases and genetics.
One recent innovation, the GARD Information Navigator, was introduced October, 2015. This interactive tool pulls together disease-specific information from across the web site, including diagnosis, treatment, financial aid, finding a specialist, etc. The Navigator currently lists 20 diseases – from chronic hiccups and neurofibromatosis, to anthrax and familial breast cancer – and more diseases will be added soon! A “Need Help” button also enables users to indicate which topics interest them and to select disease-related services or resources – including “Other Questions,” which helps users contact a GARD specialist who will provide current and accurate information about genetic and rare diseases in English and/or Spanish.
The GARD Information Center contains information on more than 6,800 rare diseases. Despite their individual rarity, together these diseases affect 25–30 million people in the U.S. It’s likely that you, or one of your students, knows someone with one of these diseases – but up-to-date trustworthy knowledge and access to specialists are often difficult to obtain. Whether accessed for personal reasons, as a resource for class presentations, or as a “hook” to spike students’ interest in unusual diseases, this web site is highly informative and easily used by English and Spanish speakers alike.
About the Creators:
The Genetic and Rare Diseases (GARD) Information Center is a program of the National Center for Advancing Translation Sciences and is also supported by the National Human Genome Research Institute (NHGRI). The mission of GARD is to provide current, reliable, and easy-to-understand information about rare or genetic diseases to the general public, in both English and Spanish.