New Website Promotes Rare Disease Patient Networking

Monday, May 23, 2011 General News J E 4

WASHINGTON, May 23, 2011 /PRNewswire-USNewswire/ -- To better serve the nearly 30 million Americans who have rare diseases, the National Organization for Rare Disorders (NORD) has launched a completely redesigned website with new features to promote global networking, awareness, and advocacy on behalf of the rare disease patient community. 

The new site, at, was designed with particular emphasis on enhancing NORD's ability to assist and partner with:

  • rare disease patient organizations
  • newly diagnosed patients and their families
  • medical researchers developing diagnostics and treatments for rare diseases
  • medical professionals
  • teachers, social workers, and others assisting patients and their families
  • the international rare disease community

NORD's web redesign will be a phased process, with many new features present at this time and others planned for the future.  New features launched at this time include:

  • a Legislative Action Center with up-to-the-minute information on the status of NORD's current advocacy priorities and how to get involved
  • a resource center for those wishing to start a new patient organization or grow an existing one
  • free overviews of rare diseases in patient-friendly language with links to patient organizations for more in-depth information
  • global networking opportunities through NORD's partnership with the European Organization for Rare Diseases
  • news tailored to the specific interests of patients, patient organizations, medical professionals, researchers, and industry

Established in 1983, NORD is a nonprofit organization that represents all Americans affected by rare diseases.  Any disease affecting fewer than 200,000 Americans is considered rare in the U.S.

SOURCE National Organization for Rare Disorders (NORD)



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