An unexpected diagnosis of a serious illness often comes as a shock to people receiving the news, as well as their families and friends. When the disease is rare or genetic, information is hard to find and even harder to understand. Patients and their loved ones may waste hours sorting through outdated, unreliable information before finding anything useful.
To help in these situations, the National Institutes of Health has established the Genetic and Rare Diseases Information Center (GARD). Funded by the NIH’s National Human Genome Research Institute and the Office of Rare Diseases, the Center is staffed by information specialists, many of whom have experience in genetic counseling. They’ve provided up-to-date and accurate, personalized information about almost 4,000 genetic and rare diseases.
Since February 2002, GARD staff members have responded to more than 12,000 inquiries on rare and genetic diseases. These inquiries come from patients, their families and friends, health care professionals, teachers, researchers and others in either English or Spanish.
GARD’s impact can be measured by more than statistics. Many of those who have taken...
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