Links to Resources
DISCLAIMER - The content on this website was developed by Lupus and Allied Diseases Association, Inc., unless otherwise noted. We have created links to other websites that we think may be of interest to you in providing further information. Please note that these are suggestions only and do not imply endorsement of those sites. When you click on a link to an external site you will be leaving our website and we want you to know that we have not created or evaluated the contents of the other sites and you should always exercise caution when visiting any website. Please notify us immediately if you feel a website linked to ours is objectionable in any way.
ALPHA Project
Lupus Foundation of America
ALPHA Project
The Addressing Lupus Pillars for Health Advancement is a comprehensive, multi-phase, global consensus initiative aimed not only at identifying and prioritizing the top challenges in the lupus field, but also creating actionable solutions to address these issues and stimulate progress. The goal of the ALPHA Project is to bring together international lupus experts to develop and implement strategies to address the critical barriers toward improving outcomes in lupus. The Project is led by the Lupus Foundation of America in collaboration with the Tufts University School of Medicine Center for the Study of Drug Development and a Global Advisory Committee (GAC) of lupus experts representing industry, academia and the patient voice.
National Resource Center on Lupus
Lupus Foundation of America
resources.lupus.org
The 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 the link above.
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The Lupus Initiative
2200 Lake Blvd. NE
Atlanta, GA 30319
(404) 633-3777
The Lupus Initiative (TLI) is a national program of the American College of Rheumatology (ACR) dedicated to reducing health disparities in lupus. It includes selfcare skills and support for individuals with lupus to become engaged and empowered through the self-management resource page.
https://selfcare.thelupusinitiative.org
Lupus Research Alliance (LRA)
270 Madison Avenue, Suite 300
New York, NY 10016
(646) 884-60000
www.lupusresearch.org
The Lupus Research Alliance is a nonprofit organization whose goal is to improve treatments while advancing lupus research toward a cure. The world's leading private funder of lupus research, having funded $182 million to date.
Alliance for Patient Access (AfPA)
1275 Pennsylvania Ave., N.W., Suite 100A
Washington, DC 20004-2417
(202) 499-4114
www.allianceforpatientaccess.org
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 recruiting, training and mobilizing policy-minded physicians to be effective advocates for patient access.
Infusion Access Foundation (IAF)
3307 Northland Dr., Suite 160
Austin, TX 78731
(512) 402-6955
The IAF is a 501(c)(3) nonprofit patient advocacy organization that works tirelessly to ensure people have access to provider-administered medications for any and all complex illnesses. Through advocacy initiatives, grassroots campaigns and community forums, we help patients stand against adversity and raise their voices to the world. Together, for treatment.
International Foundation for AiArthritis
6605 Nottingham Ave.
St. Louis, MO 63109-2661
(877) 609-4226
The International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis) helps those, like us, who are affected by autoimmune and autoinflammatory arthritis diseases have a voice "at the table" - alongside other stakeholders as equals - to solve problems that impact education, advocacy, and research.
The ACTion Council was established to retrace the history of patient engagement in rheumatology and record pivotal Concepts of Patient Involvement (CoPI), tools, and initiatives that have shaped its’ past and can help strengthen projects in the future. Led by the people who have helped shaped patient engagement in this space, the ACTion Council unites a global representation of key stakeholders in the rheumatology research community to record the history of patient engagement and track its’ continued evolution so efforts are not duplicated, value measurements can be improved, and innovative ideas can be developed from existing successes.
Lupus Clinical Trials Consortium, Inc. (LCTC)
47 Hulfish Street, Suite 442
Princeton, NJ 08540
(609) 921-1532
www.lupusclinicaltrials.org
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
www.lupus.org
The LFA is the only national force devoted to solving the mystery of lupus, one of the world's cruelest, most unpredictable, and devastating diseases, while giving caring support to those who suffer from its brutal impact.
Rheuminations, Inc.
221 East 48th Street, Ground Floor
New York, NY 10017
(212) 593-5180
Fax: (212) 593-5181
www.dxlupus.org
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)
3307 Northland Dr., Suite 160
Austin, TX 78731
(512) 402-6955
www.infusioncenter.org
The National Infusion Center Association (NICA) is a nonprofit trade association and the nation’s leading voice for non-hospital, community-based infusion providers. NICA works to ensure that the non-hospital, community-based Infusion Center remains a safe, more efficient, and more cost-effective alternative to hospital care settings in which patients can receive the high-quality care they need.
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 (1-877-226-4267)
Fax: (301) 718-6366
TTY: (301) 565-2966
www.niams.nih.gov/
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
(404) 633-3777
Fax: (404) 633-1870
www.rheumatology.org
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.
Autoimmune Association (AARDA)
19176 Hall Road, Suite 130
Clinton Township, MI 48038
(586) 776-3900
www.autoimmune.org
The Autoimmune Association has been a pioneer in serving autoimmune patients, sponsoring research, advocating for access to healthcare, and fostering collaboration to identify and explore the common threads that link autoimmune diseases.
Arthritis Foundation
1330 West Peachtree Street
Atlanta, GA 30309
(404) 872-7100
1-800- 283-7800, or your local chapter (listed in the telephone directory)
www.arthritis.org
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.
www.hopkins-arthritis.org
The Alliance for Adoption of Innovation in Medicine (Aimed Alliance)
1000 Potomac St., NW, Suite 150-A
Washington, DC 20007
(202) 559-0380
www.aimedalliance.org
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
(800) 910-2462
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 Foundation is here to help those who live with pain and their care providers find resources and inspiration.
Color of Crohn's & Chronic Illness (COCCI)
9103 Woodmore Center Dr., Suite 2004
Glenarden, MD 20706
(301) 816-8181
Color of Crohn's & Chronic Illness is a nonprofit organization focused on health equity, digestive diseases and chronic illnesses in the BIPOC (black, indigenous, persons of color) community. COCCI's mission is to improve the quality of life for BIPOC who are affected by IBD, Digestive Disorders and associated Chronic Illnesses; through Community, Research, Education, and Advocacy.
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Rheumatology Nurses Society (RNS)
8437 Tuttle Avenue, Suite 404
Sarasota, FL 34243
The Rheumatology Nurses Society is a nonprofit professional nursing and advanced practice provider (APP) organization representing registered nurses (RNs), nurse practitioners (NPs), physician associates (PAs), and other healthcare professionals who are engaged in clinical practice, education, research, and advocacy for the care of adult and pediatric patients with rheumatic diseases.
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Looms for Lupus
4141 Maine Ave.
Baldwin Park, CA 91706
(626) 814-6404
http://www.Looms4Lupus.org
Looms 4 Lupus is a non-profit organization that provides resources and awareness to minority families and those affected by Lupus as well as in-person bilingual support groups and a Spanish Facebook Live support group every second Saturday of the month. By incorporating hands-on workshops, informational clinics, bilingual resources, and psychosomatic support groups their goal is to create an environment to reassert a sense of hope during illness and to empower the individual to take charge of their life through a chronic and often life-threatening illness.
New Yorkers for Accessible Health Coverage (NYFAHC)
841 Broadway, Suite 301
New York, NY 10003
212-674-2300
www.cidny.org
New Yorkers for Accessible Health Coverage 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
845-348-0400
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.
A Patient's Guide to Insurance Enrollment is a resource developed by Global Healthy Living Foundation to support people living with chronic illness to better understand their health insurance coverage options. The guide focuses on Open Enrollment 2019 by state and provides information on Medicare, employer-based, and individual marketplace insurance.
A Patient’s Guide to Insurance Enrollment
The ALL IN Program website connects the lupus nephritis community and is a source of information, support, and resources for those affected by lupus nephritis. www.allinforlupusnephritis.com
The Us in Lupus is a resource that offers people living with lupus the skills, tools, and confidence they need to help them face lupus. Contact a lupus support specialist at
1-855-US-IN-LUPUS (1-855-874-6587)
“Listen to Your Eyes,” is a new website and Facebook community designed to provide education and support for people who are living with thyroid eye disease (TED). It was created with guidance from the TED community to help others learn about TED, connect with one another and get inspired to advocate for their eye health. The website provides key facts about TED, tips for spotting the signs and symptoms and tools for having a productive conversation with a healthcare provider. The accompanying Facebook community features real-life stories and advice from people who are living with TED, including the symptoms they experience, where they turn to for support and how they remain hopeful in spite of it all.