New Resource For Information On Genetic Or Rare Diseases

New Resource For Information On Genetic Or Rare Diseases



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 Patients and their loved ones may waste hours sorting through outdated, unreliable information before finding anything useful.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 2018, 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 advantage of​ this free service have responded enthusiastically. For example, "...thank you very much for the time, energy and expertise that went into gathering these resources for me...," a​ middle school counselor recently commented. "I have read through the material and have found it​ to​ be very helpful."

Patients and their families often contact GARD seeking referrals to​ health care professionals or​ asking for recommendations for treatment or​ medical management. GARD, as​ an​ arm of​ the federal government, cannot provide this type of​ information. Instead, GARD information specialists direct inquirers to​ resources that give treatment information; e.g., journal articles or​ clinical trials. GARD also does not provide genetic counseling or​ diagnostic testing, but will point inquirers to​ information about such services.




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