BETHESDA, Md., Tues., Feb. 3, 2004 - The Genetic and Rare Diseases Information Center (GARD), established by the National Institutes of Health's National Human Genome Research Institute (NHGRI) and the Office of Rare Diseases (ORD), announced today that it has expanded its efforts to enable people who speak Spanish to take advantage of its free services.
"NHGRI is committed to ensuring that all people have access to reliable information about genetic and rare diseases," said NHGRI Director Francis Collins, M.D., Ph.D. "We are thrilled that GARD can now offer these resources in Spanish and hope the information will prove to be of great value to patients and their families, as well as to health-care providers working in the Hispanic and Latino communities."
ORD Director Stephen C. Groft, Pharm.D., added, "This service is just the beginning. GARD is planning outreach efforts into the Hispanic and Latino communities to ensure that this service meets the needs of all involved and that news about the information center is distributed to health-care providers and others in the community."
The announcement of GARD's new Spanish service was made at an NHGRI-hosted meeting, "Engaging Latino Communities in the Future of Genomics Science," which brought together leaders from Hispanic and Latino community health-care organizations, representatives of health advocacy groups, and researchers from academia and private industry. Meeting participants discussed strategies of how to better involve Hispanic and Latino communities in genetics and genomics research at all levels.
There are more than 6,000 genetic and rare diseases afflicting more than 25 million Americans, but many of these illnesses affect relatively few individuals. An orphan or rare disease generally is considered to affect fewer than 200,000 individuals in the United States. As a result, information about these rare disorders may be limited or difficult to find, particularly in Spanish. In its effort to provide better service to Hispanic and Latino communities, GARD has hired information specialists fluent in Spanish and English to personally answer questions from patients and family members, health-care professionals and biomedical researchers.
People can reach Spanish-speaking information specialists, as well as other members of the GARD staff, by sending an e-mail to firstname.lastname@example.org or by calling the center's toll-free telephone line, 1-888-205-2311, between 12:00 p.m. and 6:00 p.m. Eastern time, Monday-Friday. Requests can also be submitted by text telephone (TTY), fax and mail.
The GARD information specialists provide callers with authoritative information about specific illnesses from existing public domain sources, including reliable Web sites, brochures, articles and even chapters from books. In the new expanded effort, this information will be summarized in Spanish and Spanish Web sites pertaining to genetic and rare diseases will be evaluated and listed.
Experts at the information center ensure that the information sent out is current and accurate. However, GARD does not provide genetic counseling and does not offer diagnostic testing, professional referrals, medical treatment or advice.
Telephone, answered Monday through Friday, 12:00 p.m. to 6:00 p.m., Eastern time:
E-mail or fax, available 24-hours-a-day:
Fax: (240) 632-9164
The Genetic and Rare Diseases Information Center
P.O. Box 8126
Gaithersburg, MD 20898-8126
For information on rare cancers, please contact the National Cancer Institute's Cancer Information Service (CIS) toll-free at: (800) 4-CANCER.
Geoff Spencer, NHGRI
Phone: (301) 402-0911
Last Reviewed: November 16, 2012