|The Lupus Initiative|
2200 Lake Blvd. NE
Atlanta, GA 30319
The Lupus Initiative (TLI) is a national program of the American College of Rheumatology (ACR) dedicated to reducing health disparities in lupus.
Lupus Research Alliance (LRA)
275 Madison Avenue, 10th Floor
New York, NY 10016
The Lupus Research Alliance is a nonprofit organization focused on inspiring, supporting and extending innovative research along paths that will dramatically improve the lives of people affected by lupus. The world's largest private funder of lupus research, having committed over $200M to date.
Alliance for Patient Access (AfPA)
1275 Pennsylvania Ave., N.W., Suite 100A
Washington, DC 20004-2417
The Alliance for Patient Access is a national network of physicians dedicated to ensuring patient access to approved therapies and appropriate clinical care. AfPA accomplishes this mission by recruting, training and mobilizing policy-minded physicians to be effective advocates for patient access.
National Resource Center on Lupus
Lupus Foundation of America
National Resource Center on Lupus is an online and multi-media collection of
resources for anyone affected by lupus, including people diagnosed with lupus,
caregivers, health care professionals and the public. The National
Resource Center on Lupus is intended to empower, educate and connect all people
affected by lupus. You can visit the National Resource Center on Lupus at resources.lupus.org
International Foundation for Autoimmune Arthritis (IFAA)
525 Clara Avenue
St. Louis, MO 63112
The International Foundation for Autoimmune Arthritis (IFAA) is the only nonprofit that focuses on the core diseases that are autoimmune and have a strong arthritic component, promoting patient-centered research, education, and awareness to patients, supporters, industry professionals, and practitioners around the world.
The LCTC is a nonprofit organization that encourages the identification and testing of promising new therapies for lupus. It provides infrastructure support grants to certain academic institutions to support their clinical research activities; encourages lupus clinical researchers from those institutions to share their expertise; supports and conducts educational efforts to show the need for lupus clinical research; and disseminates scientific insights to advance the discovery of new lupus therapies.
Lupus Foundation of America (LFA), Inc.
2121 K Street, N.W., Suite 200
Washington, DC 20037
(202) 349-1155 or 1- 800- 558-0121
The LFA assists local chapters in providing services to people with lupus, works to educate the public about lupus, and supports lupus research. LFA chapters provide education through information and referral services, health fairs, newsletters, publications, and seminars. Chapters also provide support to people with lupus, their families, and friends through support group meetings, hospital visits, and telephone help lines.
221 East 48th Street, Ground Floor
New York, NY 10017
Fax: (212) 593-5181
Rheuminations, Inc. is a private, nonprofit foundation committed to funding excellence in medical research to achieve a better understanding of the causes of lupus and to bring new treatments to market; to educate and to empower those who live with lupus and those who care for them; to establish a higher level of public awareness about the disease.
National Infusion Center Association (NICA)
1101 W. 34th Street, Suite 483
Austin, TX 78705
The National Infusion Center (NICA) is a 501(c)(3) nonprofit patient advocacy organization working to provide a national voice for office-based infusion centers across disease specialties in the interest of improving access and awareness for patients.
National Institute of Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse
NIAMS/National Institutes of Health
1 AMS Circle
Bethesda, MD 20892-3675
(301) 495-4484 or 1-877- 22-NIAMS (226-4267)
Fax: (301) 718-6366
TTY: (301) 565-2966
The National Institute of Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse is a public service sponsored by the NIAMS that provides health information and information sources. The clearinghouse provides information on lupus. Fact sheets, additional information, and research updates can also be found on the NIAMS Web site.
American College of Rheumatology (ACR)
Association of Rheumatology Health Professionals (ARHP)
2200 Lake Blvd. NE
Atlanta, GA 30319
Fax: (404) 633-1870
The American College of Rheumatology (ACR) is an organization of doctors and associated health professionals who specialize in arthritis and related diseases of the bones, joints, and muscles. The Association of Rheumatology Health Professionals (ARHP), a division of ACR, aims to enhance the knowledge and skills of rheumatology health professionals and to promote their involvement in rheumatology research, education, and quality patient care. The association also works to advance and promote basic and continuing education in rheumatology for health professionals who provide care to people with rheumatic diseases.
American Autoimmune Related Diseases Association (AARDA)
22100 Gratiot Avenue
East Detroit, MI 48021-2227
(586) 776-3900 or 1-800 -598-4668
The American Autoimmune Related Diseases Association (AARDA) is the only national nonprofit voluntary health agency dedicated to bringing a national focus and collaborative effort to the over 100 known autoimmune diseases through education, awareness, research, and patient services. By collaborating with the National Coalition of Autoimmune Patient Groups (NCAPG), AARDA supports legislative advocacy for autoimmune disease patients. AARDA provides free patient education information, physician and agency referrals, forums and symposia, and a quarterly newsletter.
1330 West Peachtree Street
Atlanta, GA 30309
1-800- 283-7800, or your local chapter (listed in the telephone directory)
The Arthritis Foundation is the major voluntary organization devoted to supporting arthritis research and providing educational and other services to individuals with arthritis. It publishes free pamphlets and a magazine for members on all types of arthritis. It also provides up-to-date information on research and treatment, nutrition, alternative therapies, and self-management strategies for patients with autoimmune diseases. Chapters nationwide offer exercise programs, classes, support groups, physician referral services, and free literature. For more information, call your local chapter, listed in the white pages of the phone book, or contact the Arthritis Foundation at the above address.
Johns Hopkins University Arthritis Center
The Johns Hopkins Arthritis Center web site where you can find information on diagnosing, treating and managing arthritis for patients, physicians and anyone else interested in arthritis.
The Alliance for Adoption of Innovation in Medicine (Aimed Alliance)
1000 Potomac St., NW, Suite 150-A
Washington, DC 20007
Established in 2013 and based in Washington, DC, the Alliance for the Adoption of Innovation in Medicine is a tax-exempt, not-for-profit organization that seeks to improve health care in the United States through access to evidence-based treatments and technologies.
U.S. Pain Foundation
670 Newfield Street, Suite B
Middletown, CT 06457
http://www.uspainfoundation.org/U.S. Pain Foundation is a 501 (c)3 non-profit organization dedicated to serving those who live with pain conditions and their care providers. Founded in 2006 by a fellow person with pain, it is the mission of the organization to connect, inform, empower and advocate for the pain community. U.S. Pain is here to help those who live with pain and their care providers find resources and inspiration.
New Yorkers for Accessible Health Coverage
841 Broadway, Suite 301
New York, NY 10003
New Yorkers for Accessible Health Coverage (NYFAHC) is a statewide coalition of 53 voluntary health organizations and allied groups who serve and represent people with chronic illnesses and disabilities, including cancer, HIV/AIDS, cognitive impairments, multiple sclerosis and epilepsy. NYFAHC is a project of Center for the Independence of the Disabled, NY.
Global Healthy Living Foundation (GHLF)
515 N. Midland Ave.
Upper Nyack, NY 10960
The Global Healthy Living Foundation
(GHLF) is a 501(c)(3) non-profit organization, based in Upper Nyack, New
York, with the mission to improve the quality of life for people with chronic
illness. GHLF advocates for improved access to care at the community level,
amplifying education and awareness efforts within its social media framework.
Central to this advocacy are GHLF’s successes educating about the importance of
diagnosis, early and innovative medical intervention, long-term lifestyle
improvement with the goal of improved outcomes.