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 and autoimmune related diseases. Founded in 1991. Programs include: research, scientific information exchange, advocacy, patient education, physician education, and public education/awareness. 1-800-598-4668 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

Fibromyalgia Network Provides educational material on Fibromyalgia Syndrome and Chronic Fatigue Syndrome. 1-520-290-5508 www.fmnetnews.com

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

Health Myths A website offering up-to-date information about internet myths and presents reliable sources to refute them. www.urbanlegends.about.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. Branch locations are Erie, Harrisburg, Pittsburgh, and Pocono/NE. 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.lupusinitiative.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. 1-888-633-4298 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 A statewide, non-profit, public interest law firm that supports & represents low-income families, older adults, & persons with disabilities having problems with accessing health care and/or quality of health services. 1-800-274-3258 www.phlp.org

Physicians’ Disability Resources Resource for social security disability application, updates, re-evaluation information & free resources. 214-363-5374 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

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 quick way to find many resources in your community to help meet the health care needs of children with chronic or disabling health conditions. 1-800-986-4550 www.helpinpa.state.pa.us

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