Highly Recommended

The National Organization for Rare Disorders

The National Organization for Rare Disorders (NORD) is a patient advocacy group serving individuals with rare diseases and related organizations. The website is full of information and resources for over 12,000 rare disorders. This highly recommended website includes a wealth of accurate and detailed information and materials for patients and families, advocacy organizations, industry members, clinicians and researchers, and aspiring volunteers.

Visit their website

Review Date: 9/17/2019

Scoring

Ease of Use

What could be a complex layout is actually relatively simple on NORD. Audience-specific materials are housed in their own sections with straightforward subtopic choices. Visitors shouldn't have much trouble searching this extensive collection of information on virtually all rare disorders.

Visual Design

No red flags here. 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 topics are well-written and very detailed. Each page features tons of citations spanning textbooks, journal articles, and web resources. Visitors can see when pages were updated going back to the 1980s. Overviews of rare disorders are aided by contact information for numerous relevant disease-specific organizations, too. The overall impression is comprehensive and reputable.

Credibility

Over 1,200 rare disorders are covered in depth and breadth on NORD. Taken in whole, the website's credibility is excellent, but some pages vary. The topics are reviewed periodically, but many are more than 2 years ago and some even 7 years or more ago.

Pros

  1. Professional web design without clutter or advertisements
  2. Rare disease database with in-depth reports on over 1,200 disorders
  3. Considered the web's one-stop resource for information on rare diseases/disorders
  4. Includes the latest information on available treatments, ongoing clinical trials, enrollment information, etc.

Cons

  1. A paid subscription is required if reading more than five disease reports per week
  2. Lack of author names across the site, and inconsistent reviewing of topics
  3. Some text-heavy areas could benefit from stimulating visuals to keep the reader engaged

Profile

Sponsors / Affiliations: The National Organization for Rare Diseases, a 501(c)(3) nonprofit charity organization with more than 260 patient organization members, Anthem Foundation, Centers for Disease Control and Prevention

Accreditations: Charity Navigator 4-Star charity, GuideStar Gold Seal of Transparency 2018

Additional Features: Clinical trial enrollment, large video collection, financial and other patient assistance programs, links to advocacy groups, online physician guides, patient support opportunities

Languages: English

Contact: nord@rarediseases.org