The National Organization for Rare Disorders and the ALS Association Commit to patient INFORM

Online Resource Allows Patients Direct Access to Latest Medical Research

WASHINGTON, D.C., Feb. 16, 2006 - The National Organization for Rare Disorders (NORD), the umbrella organization for more than 1100 rare disorder groups, and the ALS Association (ALSA) have joined the American Diabetes Association, the American Cancer Society, the American Heart Association and a group of scholarly and medical publishers as participants in patientINFORM, an effort to provide consumers quicker access to the latest medical research.

“We are very pleased to have these two distinguished organizations join our efforts,” said Peter Banks, publisher of the American Diabetes Association . “Their commitment will expand the amount of information available to help consumers improve discussions with their physicians and make informed decisions about care. ”

patientINFORM is a collaborative private sector initiative of patient health organizations, medical societies, health information professionals and medical publishers. It was created under the leadership of the American Cancer Society, the American Diabetes Association, the American Heart Association and the International Association of Scientific, Technical and Medical Publishers . Through patient INFORM, patients, their family members and other individuals can access relevant and important research articles about diseases and treatments using the Web sites of participating patient health organizations. Additional content has been developed to explain these published articles, which makes them more understandable.

By using patient INFORM , patients and their family members, or other concerned individuals, can link directly from the Web sites of the American Cancer Society , the American Diabetes Association , the American Heart Association , and soon the National Organization for Rare Disorders and the ALS Association , to the research article on the publisher's site. Each organization's Web site provides visitors with links to the full text of selected journal articles, as well as materials created by these groups to help individuals more fully understand the implications of the research. The voluntary health organizations interpret the research in ways patients can understand and apply to their own healthcare needs.

While many patient health organizations already provide comprehensive information based on the latest research, the patient INFORM model takes the unprecedented step of including the support of medical and scholarly publishers who are providing free online access to peer-reviewed medical articles available immediately upon publication.

“Patients and families in the rare disease community have a particular need to learn about their diseases. They may, of necessity, be more involved in diagnosis and treatment decisions than is normally the case,” said Mary Dunkle, NORD vice president for communications. “For more than 20 years, NORD has been providing information about rare diseases to patients and their families. Now patientINFORM will provide a platform for carrying that service to the next level.”

“As the world’s leading organization in the fight against Lou Gehrig’s disease, the ALS Association is honored to expand its service to the ALS community through our new partnership with patientINFORM.” said ALSA President and Chief Executive Officer Gary Leo. “Access to scientific research is imperative for those who have ALS and for the array of family, caregivers, legislators, researchers, health care professionals and others who need information about this devastating disease.”

In addition to the participating health organizations, patientINFORM is supported by more than 20 publishers including the American Association for the Advancement of Science; American Association for Cancer Research; American Physiological Association; American Roentgen Ray Society; American Society of Hematology; American College of Physicians (Annals of Internal Medicine); Blackwell Publishing; BMJ Publishing Group Ltd; Elsevier; The Endocrine Society, Massachusetts Medical Society (New England Journal of Medicine); Nature Publishing Group; Oxford University Press; Proceedings of the National Academy of Sciences; Society of Nuclear Medicine; Springer; Taylor and Francis; Thieme Publishing Group; John Wiley & Sons, Inc.; and Wolters Kluwer Health. Other participating and collaborative partners include the International Association of Scientific Technical and Medical Publishers, Association of American Publishers/Professional & Scholarly Publishers, HireWire Press, Cross Ref and the Welch Medical Library at Johns Hopkins University.