Lupus Resource Directory

Advocacy It is vital to keep your government officials on national, state and local levels aware of issues related to lupus. Call, write or e-mail them. United States Senate: www.senate.gov U.S. House of Representatives: www.house.gov Pennsylvania Legislature: www.legis.state.pa.us
American Academy of Dermatology Promotes leadership in dermatology and excellence in patient care through education, research and advocacy. There is access to find a local dermatologist. 866-503-SKIN (7546) www.aad.org
American Autoimmune Related Diseases Association Non-profit organization providing information on more than 100 autoimmune & autoimmune related diseases founded in 1991. Programs include: research, scientific information exchange, advocacy, patient education, physician education, and public education/awareness. 1-586-776-3900 www.aarda.org
American Chronic Pain Association Offers peer support & education in pain management to those with pain, family, friends, and health professionals. 1-800-533-3231 www.theacpa.org
American College of Rheumatology Provides geographic membership directory to find a rheumatologist, patient information on general topics and disease specific information, and links to clinical trials. 1-404-633-3777 www.rheumatology.org
Disability.gov Provides comprehensive information about disability programs, services, laws and benefits from the federal government. www.disability.gov
National Fibromyalgia Association Fibromyalgia is NOT an autoimmune disease, however it does accompany other autoimmune rheumatic and endocrine diseases. www.fmaware.org
Headcovers Unlimited A complete line of wigs, hats, turbans and caps created for women and men with hair loss. 1-800-264-4287 www.headcovers.com
Insurance Information The PA Insurance Department is a resource for consumers & the insurance marketplace to gather information about various types of insurance, seek data about an insurance company, a request or complaint that can be filed with the department. Many valuable brochures available without charge. 1-877-881-6388 www.insurance.pa.gov
Job Accommodation Network A consulting service that provides information about workplace accommodations or the Americans with Disabilities Act and related legislation. 1-800-526-7234 www.askjan.org
Laboratory Tests A patient-centered up-to-date on-line lab testing information where patients or family members can understand and manage health. Resources include: test descriptions, conditions, screening guide, news, in-depth articles, and a lab. www.labtestsonline.org
Lupus Foundation of Pennsylvania The mission of this state foundation is to promote awareness, education, service and research for those affected by lupus. 1-800-800-5776 www.lupuspa.org
The Lupus Initiative The American College of Rheumatology’s Lupus Initiative is a multi-faceted educational program designed to reduce disparities in the delivery of health care to patients with lupus. 1-404-633-3777 www.thelupusinitiative.org
Lupus Research Institute National Coalition Founded in 2000, the LRI is the only non-profit organization solely dedicated to novel research in lupus. It is felt that innovative research is the key to finding safer & more effective treatments & a cure for lupus. 1-212-812-9881 www.lupusresearchinstitute.org
Lupus Together for Clinical Trials Today Information about the clinical trials process and available clinical trials nationwide. 1-877-958-7425 www.lupustrials.org
Medic Alert Foundation Personalized MedicAlert ID pendants, bracelets, or tags available for purchase. 1-800-432-5378 www.medicalert.org
Medline Plus Provides health information on an extensive list of conditions, diseases and wellness. Also provides drug information directories, current health news and information on clinical trials. www.nlm.nih.gov/medlineplus
The Myositis Association Offers support to those affected by myositis as well as provides connections between the Medical Advisory Board and the general community. 1-800-821-7356 www.myositis.org
National Center for Complementary and Alternative Medicine The center supports rigorous research on complementary and alternative medicine to train researchers and disseminate information to the public and professionals on which CAM modality works. 1-888-644-6226 www.nccam.nih.gov
National Kidney Foundation Those with kidney complications of lupus may find support and information from this agency. 1-800-622-9010 www.kidney.org
National Women’s Health Information Center Provides national leadership to improve the health of women through policy, education, and programs. 1-800-994-9662 www.womenshealth.gov
NIAMS National Institute of Arthritis and Musculoskeletal and Skin Diseases offers information on a variety of health topics, publications, and studies with patients, patient research registries, and outreach programs. 877-22-NIAMS (226-4267) www.niams.nih.gov
OVR through PA Department of Labor & Industry The Pennsylvania Office of Vocational Rehabilitation helps persons with disabilities help themselves to prepare for, start, and maintain a career. There are sixteen offices located throughout PA. www.dli.state.pa.us
PA Client Assistance Program An advocacy program for people with disabilities provided at no cost. 1-888-745-2357 www.equalemployment.org
PA Department of Health Information on an extensive list of health topics and resources for you and your family. 1-877-724-3258 www.health.state.pa.us
Partnership for Prescription Assistance Helps qualifying patients who lack prescription coverage get the medicines they need through the public or private program that is right for them. It offers a single point of access to more than 475 patient assistance programs. 1-888-477-2669 www.pparx.org
Pennsylvania Health Law Project Helping people in need get the healthcare they deserve. Free legal advice to low-income people with insurance probelems or no health insurance. 1-800-274-3258 www.phlp.org
Physicians’ Disability Resources Resource for social security disability application, updates, re-evaluation information & free resources.  www.disabilityfacts.com
Raynaud’s Foundation Dedicated to the promotion of education and research on Raynaud’s Phenomenon and related diseases, both autoimmune and non-autoimmune. 1-800-280-8055 www.raynauds.org

Rheumatoid Arthritis Support Network A team of healthcare wtiters and professionals who are committed to helping people with rheumatoid arthritis live full, happy lives despite their diagnosis. 1-800-405-4043 www.rheumatoidarthritis.org
Scleroderma Foundation The national organization for people with Scleroderma, their families and friends. It helps patients and their families cope through mutual support programs, peer counseling, physician referrals, & education information. 1-800-722-4673 www.scleroderma.org
Sjogren’s Syndrome Foundation Information, education, advocacy and support for those with Sjogren’s Syndrome. 1-800-475-6473 www.sjogrens.org
Social Security Disability Assistance Patient and physician must initiate procedure, but if help is needed to establish eligibility with lupus or rulings for application or appeal, call your local branch and a letter of support can be written upon request. www.ssa.gov/disability
Social Security and Disability Resource Center Information and resources regarding social security benefits and disability, including lupus facts. www.ssdrc.com
The Special Kids Network System of Care Program A way to find many resources in your community in PA to help meet the health care needs of children with chronic or disabling health conditions. 1-800-986-4550 
Supplements Look up an herb, vitamin or other supplement information and evaluate claims of treatment success according to available scientific evidence. www.mayoclinic.com/health-information
The Well Spouse Foundation Well Spouse is a national, non-profit membership organization which gives support to wives, husbands, and partners of the chronically ill and/or disabled. 1-800-838-0879 www.wellspouse.org
Workplace Discrimination If you believe that you have been discriminated against because of lupus or any disability, contact the Equal Opportunity Commission at 1-800-669-4000. You can also contact the PA Client Assistance Program at 1-888-745-2357 www.equalemployment.org