Resources All Lupus Patients Should Be Aware Of!

Learn about the many resources available for individuals impacted by a diagnosis of Lupus

Support & Resources for Lupus Patients

Lupus is complex, and often misunderstood. If you’ve been diagnosed, you may be experiencing physical pain in addition to a variety of emotions. As you learn to navigate life with a chronic condition, you’ll need two critical things: information and support.

Information: Inflammatory conditions manifest in different ways for different people. Those who suffer will experience a wide range of symptoms and unique patterns of flares. Because no two cases are identical, there is a diverse body of information about these conditions, including some myths and misperceptions. It’s important to educate yourself in order to be an empowered, proactive participant in your own healthcare. Look for information that is current, credible, and referenced from the peer-reviewed scientific literature.

Support: These conditions can be lonely and isolating. Those who have not experienced a diagnosis simply cannot understand. It’s important to seek support from others in your situation. People who have been living with these conditions can provide invaluable emotional support as well as practical tips and resources. Find a community you can lean on. It really does take a village.

There are many resources available to you. The following list contains resources where individuals impacted by a diagnosis can access current information, share their experiences and both get and give emotional support.

Online Communities

TheRAConnection

TheRAConnection provides comprehensive information, community, connection, and support for individuals with lupus.

Advocacy & Support

American Autoimmune-Related Diseases Association, Inc.

American College of Rheumatology

The ACR is a non-profit organization for rheumatologists and health professionals. They develop treatment guidelines for RA and focus on education, research, advocacy, and practice support.

Lupus Foundation of America

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)

NIAMS supports research, training, and education about various forms of arthritis.

SLE Lupus Foundation

The Arthritis Foundation

The Arthritis Foundation offers information and tools to help people live a better life with arthritis.

TheRAConnection

TheRAConnection provides comprehensive information, community, connection, and support for individuals with RA.

Assistive Devices

Aids for Arthritis

Aids for Arthritis provides a variety of assistive devices for people living with RA.

Oxo

Oxo designs innovative consumer products that make everyday living easier. These easy-to-use kitchen gadgets and tools can make living with RA easier.

Clinical Trials

www.clinicaltrials.gov

ClinicalTrials.gov is a registry and results database of federally and privately supported clinical trials conducted in the United States and around the world.

Financial Issues

Directory of Financial Resources

Financial Resource Guide For Patients: A state-by-state directory.

Angel Flight

Angel Flight America helps people in need seeking free air transportation to specialized healthcare facilities.

NeedyMeds

A site to learn about patient assistance programs and other programs designed to help those who cant afford their medicines.

Medicare

Official U.S. government site for people with Medicare.

Patient Advocate Foundation

Patient Advocate Foundation (PAF) is a national 501 (c)(3) non-profit case management service that assures access to care, maintenance of employment, and preservation of financial stability for Americans with chronic, life-threatening, and debilitating illnesses.

Pharmaceutical Research and Manufacturers of America

Provides a listing of pharmaceutical programs that provide drugs to physicians whose patients could not otherwise afford them.

Patient Advocate Foundation Co-Pay Relief Program

Patient Advocate Foundation’s Co-Pay Relief (CPR) program provides co-payment assistance for prescription drugs to insured Americans who financially and medically qualify. Services are provided through CPR call counselors, and payments are made to the designated payee upon approval.

Complementary & Alternative Therapies

National Center for Complementary and Alternative Medicine

The National Center for Complementary and Alternative Medicine (NCCAM) is the Federal Government’s lead agency for scientific research on the diverse medical and health care systems, practices, and products that are not generally considered part of conventional medicine.

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