The National Organization for Rare Disorders (NORD)

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Index of Rare Diseases

This is the list of diseases currently covered in the Rare Disease Database.

Rare Disease Database

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Index of Organizations

This is the list of organizations in NORD’s Organizational Database.

Organizational Database

Read about more than 2,000 patient organizations and other sources of help.

NORD's
Washington Office

Check here to read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.

 

News Briefs

NIH Launches New Web Site on Children and Medical Research

Recognizing that children aren’t just "little adults", a new Web site from the National Institutes of Health (NIH) offers parents and healthcare providers an insider's guide to children's medical research. The site, Children and Clinical Studies, combines information on how clinical studies in children are conducted with award-winning video of children, parents, and providers discussing the rewards and challenges of participating in research.

In June, the 10-minute video earned three Telly awards, including a silver (the highest award) in education. The Tellys honor outstanding local, regional, and cable TV commercials and programs; film and video productions; and Web ads, videos and films.

"Clinical studies are essential to improving our understanding of how to diagnose, prevent, and treat disease, as well as how to stay healthy. This is true of children as well as adults," said Elizabeth G. Nabel, MD, director of NIH's National Heart, Lung, and Blood Institute (NHLBI), which developed the Web site. "We hope this new resource will help parents and others learn more about how clinical studies are conducted in children so they can make well-informed decisions about whether to enroll their child in a study."

The Web site describes why research in children is important, how studies are conducted, and what measures are taken to protect participants' safety and privacy. NHLBI, which supports pediatric research on heart disease, sickle cell anemia, and other conditions, developed the Web site in collaboration with New England Research Institutes and Hands On Productions. Additional support was provided by the NIH Foundation, the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Center for Research Resources, and the National Marfan Foundation.

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Since 1983, working toward the prevention, treatment, and cure of rare “orphan” diseases.

Previous News Briefs

ICORD 2008

FDA and European Union Adopt Shared Form

NORD Representatives Address Congress

CETT Increases Access to Genetic Tests

NORD Honors Innovators at 2007 Tribute Banquet

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Last modified Friday, March 12, 2010