National Institute Of Arthritis And Musculoskeletal And Skin Diseases

The U.S. National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) is part of the National Institutes of Health (NIH) within the Department of Health and Human Services.

In 2003, NIH established the Lupus Federal Working Group (LFWG), collaboration among the NIH Institutes, other federal agencies, voluntary and professional organizations, and industries with an interest in lupus. The Working Group is led by NIAMS and includes representatives from all relevant U.S. Department of Health and Human Services (HHS) agencies and other federal departments having an interest in lupus.

Several lupus resources are available online or in print at no charge. The materials describe the disease and its symptoms and contain information about diagnosis and treatment, as well as highlights of current research efforts supported by NIAMS. They also discuss issues such as health care, pregnancy, and quality of life for people with lupus. Available materials include a “Handout on Health,” a Lupus Nurses’ Guide, easy to read “fast facts,” and information for multicultural communities.

Program objectives:
  1. Provide information on lupus symptoms, which vary widely among patients.
  2. Heighten public awareness of major advances in different areas of lupus research.
  3. Support a Lupus Registry and Repository that gathers medical information, as well as blood and tissue samples from patients and their relatives.

NIAMS, the primary NIH organization for research on lupus, has a major focus on lupus research in its on-campus program in Bethesda, Md. NIAMS also funds lupus researchers across the nation, including a Specialized Center of Research at the University of Virginia School of Medicine in Charlottesville devoted specifically to lupus research.

Contact:
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Information Clearinghouse
National Institutes of Health
1 AMS Circle
Bethesda, MD 20892-3675
Phone: 301-495-4484
Toll-free: 877-22-NIAMS (226-4267)
TTY: 301–565–2966
Fax: 301-718-6366
Email: NIAMSinfo@mail.nih.gov

 Website: www.niams.nih.gov

Additional materials and information:
  • Find tips for working with your doctor, journal articles, clinical trials, government websites with information on medicines and research at www.niams.nih.gov/Health_Info/Lupus
  • Connect to the National Lupus Awareness Campaign at www.couldihavelupus.gov.
  • Learn about a NIAMS-funded registry that is collecting information and blood samples from children affected by neonatal lupus and their mothers.