Highly Recommended

Genetic and Rare Diseases Information Center (GARD)

GARD is a government website offering a comprehensive array of information for individuals & families living with rare diseases. There are an abundance of rare disorders represented with enough information and resources about each one to assist people living with these diseases. This highly recommended website includes informative materials for patients and families, advocacy organizations, clinicians, and researchers.

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Review Date: 4/12/2019

Scoring

Ease of Use

The layout of the GARD homepage is appealing and relatively simple. Audience-specific materials are housed in their own sections with straightforward subtopic choices. Visitors shouldn't have much trouble searching this extensive collection of easy to read information on virtually all rare disorders.

Visual Design

The site has a clean, professional design in keeping with its mission and message. The disease-specific pages could use images, but otherwise this website doesn't disappoint.

Quality

The GARD site has detailed and accurate information about an impressive range of rare diseases and genetic disorders. There are sections for different audiences, including patients & families, healthcare professional, and researchers. The high-quality information comes from medical literature, reputable government websites, medical databases such as Up-to-Date, medical textbooks, journal articles, and web resources. Overviews of rare disorders are aided by contact information for numerous relevant disease-specific organizations

Credibility

Taken in whole, the website's credibility is good, although the website rarely cites its content authors/editors. It is being part of the NIH that lends credibility to the topics on the website. Each section has a date of the last update, but many are more than 2 years old. There is no indication of periodic review of entire topics.

Pros

  1. Information about 'orphan drugs,' which are commonly used in rare diseases
  2. Many of the patient topics and available resources are also presented in a verbal format
  3. The breadth and depth are both ideal for patients and families to get a good grasp of the conditions covered
  4. Links to disease-specific information and a wide range of resources are available in a user-friendly format

Cons

  1. Few of the topics credit individual authors or editors responsible for the content
  2. Many topic were last updated more than 2 years ago
  3. There is no indication of periodic review of entire topics

Profile

Sponsors / Affiliations: National Center for Advancing Translational Sciences, National Institute of Health, National Human Genome Research Institute

Accreditations: None

Additional Features: News coverage & research updates, videos, brochures & publications, disease-specific resources, including specialist & clinic finders, educational information for teachers & students, glossary

Languages: English, Spanish

Contact: anne.pariser@nih.gov

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