Dealing With A Diagnosis (NAPSA)—An unexpected diagnosis can be a shock, but the steps you take immediately after learn- ing of your condition are among the most important you'll take. That’s the word from doctors who say that upon being diagnosed with a disease, it is vital that people gather information about their ailment, learn their treatment options and track down experts who canhelp. Valuable Resources The National Institutes of Health (NIH) has established the Genetic and Rare Diseases (GARD) Information Center to aid in this process. Funded by the NIH’s National Human Genome Research Institute (NHGRI) and the Office of Rare Diseases (ORD), the center provides free access to experienced information specialists who answerpatient or health care provider questions about a genetic or rare disease diagnosis in clear, understandable terms. It can also help people search for health information covering a genetic or rare disease diagnosis. Since it was established in 2002, GARD has responded to more than 16,000 inquiries on more than 4,000 rare and genetic diseases. Questions come from patients and their families, as well as from friends, health care professionals, teachers, researchers and others, in both It’s important to find credible information about a disease, should you be diagnosed. English and Spanish. Making Information A Priority People requesting information receive a response from GARD within four to seven business days, on average. However, inquirers may receive a response even sooner. For example, an urgent request may receive a response within 24 hours or even immediately. Next Steps... After learning about your condition, it may be helpful to reach out to others with your disease. Talk to your doctor or contact a GARDexpert to learn of any support groups available. You can contact GARD at (888) 205-2311 or by GARDinfo@nih.gov. e-mail at
