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Marking 15 years of the Genetic and Rare Diseases Information Center.

Janine LewisMichelle SnyderHenrietta Hyatt-Knorr
Published in: Translational science of rare diseases (2017)
Rare disease patients and their families face challenges in finding information about their symptoms or diagnosis, prognosis, treatment options, significance for family members, and research opportunities. Lack of available clinical expertise can leave patients, their family, and friends with little choice but to become knowledgeable on their own. GARD fills a critical need by providing the public with vetted, evidence-based information that empowers people to engage in their own health care and seek research studies of relevance.
Keyphrases
  • healthcare
  • end stage renal disease
  • ejection fraction
  • newly diagnosed
  • chronic kidney disease
  • health information
  • mental health
  • dna methylation