Lupus Resources

General Resources

• 
  Massachusetts Department of Public Health
  617-624-5757
• Lupus Foundation of America
  (Toll free) 1-800-558-0121
• Massachusetts Chapter, Lupus Foundation of America
  (Toll free) 1-877-NOLUPUS
  (1-877-665-8787)
• Lupus Foundation of Greater Washington
  703-684-2925
• Arthritis Foundation
  (Toll free) 1-800-283-7800
• Arthritis Foundation of Massachusetts
  (Toll free) 1-800-766-9449
• National Institute of Arthritis
  Musculoskeletal and Skin Diseases (NIAMS),
  National Institutes of Health
  (Toll free) 1-877-22-NIAMS
  NIAMS is a part of the National Institutes of Health and has many resources on lupus. You can call the toll-free number to request any of the NIAMS resources below:
  
  • Patient information sheets about lupus
  • "What Black Women Should Know About Lupus"
  • Lupus "Handout on Health" (NIAMS)

Spanish Resources

• Lupus Foundation Of Greater Washington

Personal Support

• Women of Courage (support group for women living with lupus)
  Contact Bobbie Drake-Saucer,
  617-989-2770
• Daughters of Comfort (support group for women with health issues)
  Contact Loraine Hector,
  617-298-0278
• Churches Organized to Save Tomorrow (COST)
  Contact Teresa Kelley,
  617-298-0305

Children Living with Lupus

• Kids living with lupus
  Nemours Foundation
• The Dish
  A newsletter by and for teens with lupus (Lupus Foundation of America's Wisconsin Chapter)
  414-541-3033 for subscription information.

For Friends and Family of People Living with Lupus

• The Well Spouse Foundation (organization for spousal caregivers)
  (Toll free) 1-800-838-0879
• National Family Caregivers Association
  (Toll free) 1-800-896-3650

Lupus Research

• Lupus Multiplex Registry & Repository
• University of Minnesota
  The Genetics of Systemic Lupus Erythematosus Family Study ("The Sisters with Lupus Research Project")
• Clinical trials search (search under "lupus")

Sun and Ultraviolet Lighting Sensitivity

Some women with lupus recommend the following resources for sun and ultraviolet lighting sensitivity.

The Mass. Dept. of Public Health does not endorse any specific products or vendors.

• Sun Solutions, Inc.
  (Toll free) 1-800-895-0010
• Sun Precautions (clothing)
  (Toll free) 1-800-882-7860
• Friends Boutique
  at the Dana Farber Cancer Institute
  (hats) 617-632-2211

Other Health Resources

• MedLine Plus - online medical information
• How to find medical information
• California Medical Association - "How to Evaluate Medical Information Found on the Internet"
• National Center for Alternative and Complementary Medicine, NIH
  (Toll free) 1-888-644-6226
• Roads We Have Traveled
  A collection of personal stories about life with lupus
• Boston Center for Independent Living
  617-338-6665
• Minorities with Disabilities Advocacy Center
  617-522-9840
• Social Security Administration
  Boston District Office
  (Toll free) 1-800-772-1213
• Look up the toll free phone number for district offices in Brookline, Cambridge-Somerville, Chelsea, Dorchester, Roslindale or Roxbury (in the U.S. Government section of the phone book)
• U.S. Department of Justice Americans with Disabilities Act (ADA)
  Toll free information line: 1-800-514-0301
• A Guide to Disability Rights Law
• ADA questions and answers
• Disability and Business Technical Assistance Center (DBTAC)
  Toll-free 1-800-949-4232 to reach the center nearest you.
• The Kansas Commission on Disability Concerns

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This information is provided by the within the Department of Public Health.