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. 

                                                                                                                                                                                                                             

 

 

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. 

 

                                                                                                                                                                                                                            

 

The Lupus Initiative

2200 Lake Blvd. NE
Atlanta, GA  30319
(404) 633-3777

http://thelupusinitiative.org 

 

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 
(212) 218-2840 
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.
 

 

                                                                                                                                                                                                                            

 

 

International Foundation for Autoimmune Arthritis (IFAA)

525 Clara Avenue
Suite 101
St. Louis, MO  63112
(877) 609-4226

www.AIArthritis.org

 

The International Foundation for Autoimmune Arthritis (IFAA) helps those living with autoimmune and autoinflammatory diseases with arthritis as a major component by utilizing the strength of patient voices to impact education, advocacy, and research.

 

 

                                                                                                                                                                                                                             

 

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 (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 (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. 
 

 

                                                                                                                                                                                                                           

American Autoimmune Related Diseases Association (AARDA)  
22100 Gratiot Avenue
Eastpointe
East Detroit, MI 48021-2227
(586) 776-3900 or 1-800 -598-4668 
www.aarda.org

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.

 

 

                                                                                                                                                                                                                             

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.

  

                                                                                                                                                                                                                             

 


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

www.ghlf.org

 

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) 

https://www.usinlupus.com

 

 

Looms for 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.

http://www.Looms4Lupus.org

Lupus and Allied Diseases Association, Inc.

P.O. Box 170

Verona, NY  13478

 

Phone 315-829-4272
Fax 315-829-4272

Toll free 1-866-2-LUPUS-4

e-mail -  Info@LADAinc.org

© 2018 ALL RIGHTS RESERVED, LUPUS AND ALLIED DISEASES ASSOCIATION, INC.