Resources for People Living with Lupus


What is Lupus?

Us in Lupus:

What is Lupus?:

Diagnosis of Lupus:

How Lupus Affects the Body

The Spoon Theory: This provides a simple approach to explaining how lupus affects a person with lupus' life, visit YouTube:

The Lupus Companion
The Lupus Companion by the American College of Rheumatology (ACR) is a symptom, medication and appointment diary for people living with Systemic Lupus Erythematosus (SLE). The Lupus Companion makes it easy for you to record how you are feeling day-to-day

Lupus: Learning & Living (Slide presentation at mini-conference hosted by Lupus Foundation of America)
Lupus: Learning and Living Presentation [PDF]

Lupus Diet and Nutrition (article)
Eat to avoid flares, limit drug side effects, stave off complications and simply feel better.

Lupus and UV from Sun, Flourescent Lights & CFL Lights

see related forums under "Social Media, Lupus Forums & Blogs" below

US Sunscreens Highlights from Environmental Working Group (EWG)
(all people with lupus should wear sunscreen everyday indoors and outdoors)

SunGuard Wash-in Sun Protection

10 Wearable Ways to Protect Yourself

Accommodation Ideas for Photosensitivity

Accommodating People With Lupus | Job Accommodation Network

Decreasing UV exposure from fluorescent lights

Abstract of Study: Fluorescent light activates...Implications for patients with systemic lupus erythematosus

Naturalux Flourescent Lighting Filters
NaturaLux™ Filters are designed to absorb the damaging UV rays from fluorescent lamps that can trigger lupus health "flare-ups." Additionally, Inspired Concepts and Inspired Sales are proud to be working with lupus organizations to educate and to help provide relief for those who suffer from lupus.

Medical & Health Insurance Assistance

Social Security and Disability Resource Center
The Social Security and Disability Resource Center website ( is written by a former disability examiner and addresses questions that claimants often have about the application and appeal process but, often as well, have trouble finding clear answers to.

Additional links:

Social Security Disability SSI and Filing based on Lupus:

Lupus, Social Security Disability, and Applying for Benefits

California Medical, Insurance, and Health Benefits Resource List [PDF]
Compiled by the LFNC. This informative PDF document includes brief descriptions and contact information for the following resources: Medicare, Medi-Cal, Major Risk Medical Insurance Program (MRMIP), Pre-Existing Conditions Insurance Plan (PCIP), Free Prescriptions, County Free Clinics, and Social Security Disability.

Disability Rights and Accessibility Links [PDF]
Compiled by Caroline Hampton of This PDF document includes helpful links from guides to disability costs and personal finances, business travel tips, and to types of service dogs.

National Library of Medicine | Financial Assistance: Medline Plus »
Links on how to get help with medical expenses, benefits for people with disabilities, help with prescription drugs and more...

Lupus Foundation of America | Financial Resources: Healthcare »
Links to healthcare, Social Security Disability, Medicare, Medicaid, Food Stamps, and Other Government Assitance Websites

Clinical Trials & Studies

Sanguine Biosciences »
Goal is to help accelerate the research process by making it easy for patients to participate in preclinical and clinical trials. In order to accomplish this, we’ve developed a unique model that uses a mobile force of phlebotomists across the country. A local phlebotomist goes directly to each patient’s home and draws your blood in a process, which usually takes under 30 minutes.

Our phlebotomist will then reimburse the patient $50 for their time and another $25 to a non-profit of their choice (more often than not, patients choose the organization that referred them in the first place, for example, Lupus Foundation of Northern California).

STEADY: STudy Evaluationg Alx-0061 (Ablynx) for moDerate to severe sYstemic lupus erythematosus »
No longer accepting participants. To assess the efficacy and safety of different dose regimens of Ablynx (ALX-0061) administered subcutaneously (s.c.) to subjects with moderate to severe active, seropositive SLE compared to placebo. Secondary objectives: To assess the pharmacokinetics (PK), pharmacodynamics (PD), immunogenicity, flare rate, steroid reduction and health-related quality of life, with different dose regimens of ALX-0061.

CLUES: California Lupus Epidemiology Study
CLUES is funded by the U.S. Centers for Disease Control and Prevention (CDC) to study lupus in the San Francisco Bay Area. The Alliance for Lupus Research is also contributing to funding this research. Dr. Lindsey Criswell, the lead researcher on the Lupus Genetics Project, is collaborating with Dr. Maria Dall'Era, Dr. Jinoos Yazdany, and Dr. Patricia Katz on this project.

Lupus Therapeutics: Patient-Centric Clinical Research »
We connect patients directly with clinical trials to help move research forward faster through LuCIN, our expansive, first-of-its-kind network of clinical trial sites at leading academic research centers throughout North America. This powerful network enables us to work with expert clinician scientists focused on lupus research to ensure potential new therapies are safe, effective, and accessible to all people with lupus.

The Access Clinical Trial for Lupus Nephritis
Being diagnosed with kidney disease as a result of lupus (called 'lupus nephritis') brings new challenges... and new choices. This site is here to help you learn more about your diagnosis and about your options for treatment – including the option of participating in the ACCESS clinical trial.

Clinical Connection
By bringing both of our clients (Study Participants and Clinical Investigators) together we are able to revolutionize the Study Participant recruitment process in order to make it quicker, more accurate, and more personal than ever. The level of care, attentive service, and dedication to privacy that we provide will go beyond what is expected and our superior service will make us the leading Study Participant placement firm nationwide.

LFA Center for Clinical Trials Education (CCTE):
Learn more about participating in clinical trials and find clinical trials taking place in your area.. Using the CCTE, you can find resources as well as ask questions about clinical trials or share your experience.

Lupus Research Organizations

Lupus Research Alliance (LRA)
Combining the Alliance for Lupus Research, the Lupus Research Institute and the S.L.E. Lupus Foundation, the Lupus Research Alliance is a strong new champion for the lupus community. Collectively, our three organizations have already devoted more than 75 years to the cause and funded over $200 million in pioneering lupus research. By pushing the limits of scientific exploration and advancing research to new treatments, we seize every opportunity to transform the lives of all affected by this disease – patients, families, loved ones, and the entire lupus community.

The Lupus Initiative
The Lupus Initiative® (TLI) which is a multi-faceted education program designed to reduce disparities and improve outcomes among people with lupus. The initiative is dedicated to improving the diagnosis, treatment, and management of lupus in populations disproportionately affected based on race, ethnicity, and gender.

Our digital health learning system uses the most advanced technologies to help you better understand wellness, aging, and disease. As new understanding emerges, you will gain access to tools, information and connections—to people like you—to find a clearer path forward to your own future health.

Local Organizations & Programs

The Lupus Foundation of Northern California (LFNC)
The LFNC provides a variety of services to support and educate the community, particularly lupus patients, their families and the medical community. Visit this informative website and finda a number of services including conferences, books & articles, and other website resources.

NEW! The Lupus Program
The Childhood and Adolescent Lupus Program provides diagnostic and therapeutic services aimed at maximizing the future health of young patients with lupus. The program focuses on optimizing disease control and providing preventative services for some of the common long-term complications that children with lupus face. These services address heart and bone health, transition planning and social support.

UCSF Lupus Clinic
The Lupus Clinic focuses on the evaluation and management of systemic lupus erythematosus (SLE), particularly moderate to severe forms of the disease. The clinic has expertise in managing lupus nephritis and other organ-threatening manifestations of SLE. Doctors work closely with dermatologists, nephrologists and other specialists to collaboratively manage all aspects of this complex, systemic disease.

UCSF Lupus Peer Support Group (for ages 15 - 23) - Unavailable until further notice
Join the UCSF peer group and meet other teens and young adults with Lupus. Contact Mariel dela Paz, MSW at (415) 502-2019.

Asian Health Services
A comprehensive community health center that provides medical care, health education, insurance counseling, and client advocacy in the underserved Asian and Pacific Islander (API) population in Alameda County.

Global, National Organizations & Programs

World Lupus Day
World Lupus Day is sponsored by the World Lupus Federation, a coalition of lupus patient organizations from around the world, united to improve the quality of life for people affected by lupus. Through coordinated efforts of its global affiliates, the World Lupus Federation works to create greater awareness and understanding of lupus, provide education and services to people living with the disease, and advocate on their behalf. Learn more at

World Lupus Federation (WLF)
World Lupus Day is sponsored by the World Lupus Federation, a coalition of lupus patient organizations from around the world, united to improve the quality of life for people affected by lupus. Through coordinated efforts of its global affiliates, the World Lupus Federation works to create greater awareness and understanding of lupus, provide education and services to people living with the disease, and advocate on their behalf. Learn more at

Lupus Alert
Lupus Alert is the only registered NGO (non-governmental organization) that provides active physical, moral, emotional and financial support to patients and families with Lupus and other related autoimmune diseases in Mauritius. Founded in January 2000, Lupus Alert has been applauded internationally for its pioneering work and vision. The organization is run entirely by volunteers of whom the majority has Lupus. They use their own experiences of the illness to assist those newly diagnosed in understanding their condition and offer an empathetic listening ear to any problems the lupus sufferer may be facing.

Lupus Foundation of America, Inc. (LFA)
The nation's leading non-profit voluntary health organization dedicated to finding the causes and cure for lupus. The LFA's mission is to improve the diagnosis and treatment of lupus, support individuals and families affected by the disease, increase awareness of lupus among health professionals and the public, and find the causes and cure. Research, education, and patient services are at the heart of LFA's programs. Blog: The Road to a Lupus Cure»

Lupus and Allied Diseases Association
The Lupus and Allied Diseases Association, Inc., was founded in 1978 and is a national non-profit organization dedicated to enhancing quality of life for those impacted by lupus and allied diseases and other conditions of unmet need by fostering collaboration among stakeholders and promoting innovative advocacy, education, awareness and biomedical research programs. As a passion-driven, patient-focused association led by individuals with lupus and their loved ones, it is our goal to improve access to care and quality of life by supporting initiatives that lead to the discovery of better diagnostics, superior treatments, causes and cures.

More Than Lupus
The More Than Lupus Foundation is a not-for-profit organization formed by Creator of More Than Lupus, Kelli Roseta.
The mission of the More Than Lupus Foundation is to provide programs and support for those living with lupus, advocate for their needs, and collaborate with other government and lupus organizations to strive toward improving quality of life, and ultimately finding a cure.  
The vision of the More Than Lupus Foundation is clear, to bring awareness in a world where many still do not know what lupus is, nor take it seriously, and allow lupus to finally be recognized and supported by the public and government. Additionally, to provide desperately needed services to those living with lupus, so that no person feels like he or she is fighting alone.

Kaleidoscope (formerly Molly's Fund)
We are a nonprofit organization and a community devoted to advancing our mission of supporting those living with lupus. Our mission is to EDUCATE the public and to INFORM the medical community about lupus, to ADVOCATE for earlier life-saving diagnosis, to SUPPORT people living with lupus and to COLLABORATE with government and foundations to fund research toward a cure.

American College of Rheumatology (ACR):

Arthritis Foundation
Visit this page and do a search on lupus. The site offers various abstracts and information related to lupus. The Arthritis Foundation is the only national not-for-profit organization that supports the more than 100 types of arthritis and related conditions with advocacy, programs, services and research.

Association of Asian Pacific Community Health Organizations (AAPCHO)
To be a national leader and critical voice for Asian American, Native Hawaiian, and Pacific Islander (AA&NHPI) community health centers (CHCs) and consumers, ensuring that our communities have better access to affordable, high quality, and culturally and linguistically proficient health care.

NEW! Sunshine Behavioral Health: Mental Health Issues Facing the Asian American Community
Mental Health Issues Facing the Asian-American Community
In 2020, Asian Americans experienced mistrust, insults, and even physical attacks because people erroneously believed they contributed to the creation and spread of the virus that causes COVID-19. The COVID-19 pandemic is not the first time that Asian Americans have encountered racism. It’s also not their only mental health concern. Despite such challenges, members of Asian American communities can find assistance for addiction and other mental illnesses. They can also find resources that help them report discrimination and crimes against them.

Centers for Disease Control and Prevention
Systemic Lupus Erythematosus (SLE or Lupus)

Cross Cultural Health Care Program
CCHCP serves as a bridge between communities and health care institutions to ensure full access to quality health care that is culturally and linguistically appropriate. Services include cultural competency training programs, interpreter information, and on-line library.

The National Center for Complementary and Alternative Medicine (NCCAM)

The National Lupus Awareness Campaign

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

The National Kidney Foundation

The Rheumatoid Arthritis Support Network (RASN)
The Rheumatoid Arthritis Support Network (RASN) is dedicated to providing up-to-date information and resources for rheumatoid arthritis patients. Our goal is simple. We want RA patients to know their options and fully understand their diagnosis. You can take steps, right now, to improve symptoms and your quality of life.

Scleroderma Foundation
The Scleroderma Foundation is a qualified national nonprofit operating under 501(c)(3) status.  The foundation’s federal tax identification number is 52-1375827.  Our primary goal is to raise funds for our three-fold mission of support, education and research.  The foundation has 20 active chapters and 160 support groups across the country.

Sjogren's Syndrome Foundation
Founded in 1983 the SSF provides patients with practical information and coping strategies that minimize the effects of Sjögren's. In addition, the Foundation is the clearinghouse for medical information and is the recognized national advocate for Sjögren's.

Fibromyalgia & Lupus
Fibromyalgia & Lupus National Association is a 501c3 non-profit organization striving to promote fibromyalgia lupus awareness. FLNA advocates for quicker diangnosis and more effective treatments while driving for more scientific research funding. The goal is to help patients live a less painful life and empower patients to begin a healtheir lifestyle through diet, exercising, and stres reduction.

Hospital for Special Surgery: Lupus Programs
Hospital for Special Surgery offers free programs that reflect our comprehensive approach to care for people with systemic lupus erythematosus. Learn about your illness, learn to live more fully from health care professionals and from others who have the same illness. It offers the following programs:

Social Media, Lupus Forums & Blogs

SOCIAL MEDIA-------------------------------------------------------------

All In - Connecting the Lupus Nephritis Community
If you or a loved one is living with lupus nephritis, you know firsthand that the condition is not widely recognized or understood. This may leave you feeling isolated and in need of answers. It's important to know you're not alone, and we're here to support you. The ALL IN program website is a source of information, support, and resources for those affected by lupus nephritis. Together, we can raise awareness and offer support. There is strength in community.

Facebook Group: Lighthouse for Lupus
Closed group, you will need to request to be added
The Lighthouse For Lupus Facebook Group is committed to providing a place that affirms and nurtures the creative spirit of each individual and provides the sharing of personal experiences of individuals who face living their lives with an incurable disease called Lupus.

MyPatientMatch helps you find the patients that have the most in common with you, so you can share health experiences and find the best social support. All health data is anonymized and contributed to patient-centered research.

LupusConnect™ by the Lupus Foundation of America
An online lupus community where individuals with lupus and their loved ones can engage with others like them to share experiences, find emotional support and discuss practical insights for coping with the daily challenges of the disease. It’s an easy-to-use, online platform that encourages its community members to ask questions, reply to posts and read about others' experiences in a safe and comforting community. 

MyLupusTeam is a social network and online support group for people who are living with lupus. MyLupusTeam gives you the easiest way to find the best team of providers and peers who are living with lupus. Share with others like you, and learn from their experience.


Caring Bridge:
CaringBridge is a 501(c)(3) nonprofit providing free websites that connect family and friends during a serious health event, care and recovery.

A CaringBridge website is personal, private and available 24/7. It helps ease the burden of keeping family and friends informed. The websites are easy to create and use. Authors add health updates and photos to share their story while visitors leave messages of love and support in the guestbook.


Forum: Support Group for Sun and Light Sensitive People:

MDjunction - People Connecting People:
Lupus Forum

We Have Lupus:
A well organized forum with topic discussions including newly diagnosed, symptoms, medications, and general questions.

Professional Services

Shunya Anding, CCPC
Certified Co-Active ProfessionalCoach
I coach people with chronic pain and discomfort and have worked with several people with autoimmune/lupus helping them shift their perspectives and choose their activities for living an easier, more fulfilling life.
Free intro session. 

Erica Bridgeman
Independent Wellness Advocate
doTerra pure essential oils are revolutionizing the way families manage their health. We harness nature's most powerful elements and share these gifts through our global community of Wellness Advocates.
*See how Certified Pure Therapeutic Grade Essential Oils can help you in Handouts section

Judy Burgio, R.Ph, C.N.
Registered Pharmacist, Certified Nutritionist
Judy Burgio has been well-known as a highly-skilled Integrative Health Specialist for over 20 years. In her private practice in Mill Valley, California, she sees clients in person and also conducts telephone consultations all over the U.S. and internationally. Combining her expertise as both a pharmacist and a nutritionist uniquely reflects her passion for optimal health and life-balance.
*See her food plans in Handouts section

Mayah Hegre, LMT & Health Educator
Emotional Freedom Technique Practitioner & Certified Massage Therapist
Mayah is a Emotional Freedom Technique (EFT) practitioner with a background in holistic health, 18 years as a licensed massage therapist, and former Co-owner/Director of Sophia Healing Center, she is passionate about health and bringing EFT out into the world. Her patient loving presence and personal experience with chronic illness makes her a great practitioner for those at their most vulnerable times. She is available to lead EFT circles for groups and private sessions in the SF Bay Area.

Jenny Mann, ND
Naturopathic doctor at San Francisco Preventative Medical Group
Dr. Jenny Mann’s approach in naturopathic medicine focuses on supporting the body’s innate ability to restore health. With an interactive intake, thorough physical exam, and conventional and alternative lab testing, Dr. Mann gathers information from many sources. She focuses on healthy diet, sleep, exercise and stress management as a foundation for balance in the body.
*See her food and other materials in Handouts section

Jyoti M. Rao, MFT
Pacific Psychotherapy of San Francisco
Help for chronic illness
870 Market Street, #469
San Francisco, CA 94102

Lane Ratchford, MA, CHt
Psychotherapist & Hypnotherapist
Lane Ratchford is a psychotherapist and certified hypnotherapist in San Francisco. She specializes in helping Lupus patients work with psychological aspects of the disease. As a former Lupus patient herself, she is intimately familiar with the experience, and is passionate about helping fellow Lupus patients live their best, fully-thriving lives. In her own and in her clients' lives, she has found psychotherapy to be a powerful resource that can significantly impact flares and symptoms. Call: 415.255.2524

Regan MOVES is a patent-pending, novel exercise and nutritional program designed to help those with chronic challenges improve the quality of their lives and get fit. Whether dealing with pain, a sports injury, limited motion or low energy, Regan MOVES makes exercise possible by maximizing motion of the body and minimizing joint exertion. It was created specifically so that those with chronic challenges such as lupus, MS, arthritis, fatigue, osteoporosis and other challenges could work out and get strong.
Regan Moves email
*See Three-Day Diet in Handouts section

Helpful Websites

Lupus and Women's Hair Loss

Environmental Working Group (EWG)
The mission of the Environmental Working Group (EWG) is to use the power of public information to protect public health and the environment. EWG is a 501(c)(3) non-profit organization, founded in 1993 by Ken Cook and Richard Wiles. Find safe foods to eat, safest sunscreens, safest cosmetics.

+ Guide to Sunscreens:
+ Shopper's Guide to Pesticides in Produce:

via Public Service Navigator

Handouts from Support Group Meetings & Education Days

The following contributions are PDF Documents unless noted.


Anti-Inflammatory Diet by Jenny Mann, N.D.

Gluten-Free Food Plan by Judy Burgio, R.Ph., C.N.

Gluten-Free Recommendations by Jenny Mann, N.D.

Good Fats/Bad Fats by Judy Burgio, R.Ph., C.N.

The Healthy Food Plan by Judy Burgio, R.Ph., C.N.

Holistic Nutritional Approaches for Lupus (2 MB)
presentation by Kandice Stellmon, C.N.

Mediterranean Diet Cuts Death From Chronic Diseases [website]
HealthDay Report

Certified Pure Therapeutic Grade (CPTG) essential oils from doTERRA by Erica Bridgeman, Wellness Advocate.

Three-Day Diet by Regan Moves

NEW! Compiled by Alicia Levin, Support Group Member


MIND, BODY, SPIRIT-----------------------------------------------------------

Breathing: An Introduction by Dr. Andrew Weil [website]
contributed by Susan Patick

Complementary Treatments by Susan Patick

Living Healthy with Lupus Bibliography by Susan Patick


ADDITIONAL LUPUS SUPPORT-----------------------------------------------

Lupus Hair Loss contributed by Sheila Matechuck

Naturopathic Doctor, Jenny Mann Handouts from Saturday, June 21

Self-Advocacy with Health Care Professionals by Maria gil de la Madrid

Self Management of Lupus presentation by Susan Patick


Do you have any lupus resources, such as books or articles, you'd like to share? Please feel free to contact us!