New Resource For Information On Genetic Or Rare Diseases
Below is a MRR and PLR article in category Health Fitness -> subcategory Disease Illness.
New Resource for Information on Genetic and Rare Diseases
Helping Patients and Families Navigate Unexpected Diagnoses
An unexpected diagnosis of a serious illness can be shocking for patients and their families. This is especially true when the disease is rare or genetic, making it challenging to find reliable and understandable information. Often, people spend countless hours sifting through outdated or misleading content before finding anything helpful.
To address this issue, the National Institutes of Health (NIH) established the Genetic and Rare Diseases Information Center (GARD). Supported by the NIH's National Human Genome Research Institute and the Office of Rare Diseases, GARD is staffed with information specialists who often have backgrounds in genetic counseling. They provide accurate and personalized information on nearly 4,000 genetic and rare diseases.
Since its inception in February 2002, GARD has handled over 12,000 inquiries from patients, families, healthcare professionals, educators, and researchers. The service is available in both English and Spanish.
Beyond the numbers, GARD's impact is evident in the positive feedback it receives. One middle school counselor expressed gratitude, saying, "Thank you for the time, energy, and expertise that went into gathering these resources for me. I have read through the material and found it very helpful."
While GARD cannot provide specific referrals or treatment recommendations as it is a federal entity, it guides users to credible resources like journal articles and clinical trials. Although it does not offer genetic counseling or diagnostic testing, it can direct individuals to information about these services.
GARD remains a crucial resource for those seeking clarity and support in the face of genetic and rare diseases.
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