- What is Lupus?
- Lupus and UV from Flourescent Lights and CFLs
- Medical & Health Insurance Assistance
- Clinical Trials
- Lupus Research Organizations
- Local Organizations & Programs
- Nationwide Lupus Organizations
- Lupus Social Media, Forums & Blogs
- Professional Services & Other Helpful Websites
- Handouts: Nutrition, 3-day diet
What is Lupus?
Lupus Check by GSK: http://www.lupuscheck.com/
What is Lupus?: http://lfnc.org/what_is_lupus.html
The 11 Criteria: http://lupusresearchinstitute.org/lupus/lupus_diagnosis
How Lupus Affects the Body
Detailed article written in layman's terms covering Systemic Lupus Erythematosus and how it attacks various organs in the body including: cardiopulmonary system, gastrointestinal, central nervous system, musculoskeletal, kidney, vasculities, Sjogren's, skin, oral disease, antiphospholipid antibodies, blood disorders, the eyes, osteoporosis, and lupus in combination with other connective tissue or autoimmune diseases.
The Spoon Theory: This provides a simple approach to explaining how lupus affects a person with lupus' life, visit YouTube: http://www.youtube.com/watch?v=jn5IBsm49Rk
The Lupus Companion
A Free App to Help You Keep Track of Your Lupus Care. A free new app, the Lupus Companion, developed as part of the Lupus Initiative, has just been released to help people with lupus keep track of their medications, appointments and symptoms. Developed by doctors and patients, the app includes a short questionnaire designed to be taken every three months to help monitor disease activity.
Lupus and UV from Sun, Flourescent Lights & CFL Lights
US Sunscreens 2014 Highlights
(all people with lupus should wear sunscreen everyday indoors and outdoors)
SunGuard Wash-in Sun Protection
Lupus Now Magazine: Lighting the Way
Abstract of Study: Fluorescent light activates...Implications for patients with systemic lupus erythematosus
Accommodating People With Lupus | Job Accommodation Network:
A Service of the U.S. DOL Office of Disability Employment Policy
Medical & Health Insurance Assistance
Social Security and Disability Resource Center
The Social Security and Disability Resource Center website (www.SSDRC.com) 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.
Social Security Disability SSI and Filing based on Lupus:
How does Social Security consider lupus as a disability?
Lupus, Social Security Disability, and Applying for Benefits
California Medical, Insurance, and Health Benefits Resource List [PDF]
Compiled by the LFNC. This 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.
Link to health insurance options for the state of California.
Government Resources via LFA Resources Link »
Sidebar links to Social Security Disability, Medicare, Medicaid, Food Stamps, and Other Government Assitance Websites
Prescription assistance programs and oher patient and family resources via LFA Resources Link »
Sidebar links to Patient Education Programs, Center for Clinical Trials, Financial Aid, Scholarships
Clinical Trials & Studies
Just added! 23andMe »
At 23andMe, we believe your genetic data can play a critical role in shaping research. Knowing more about how genetics relate to disease can provide additional information on how people might respond to treatment, which may eventually lead to a cure. Understanding the underlying genetics of lupus could le ad to better diagnostics and more effective treatments with fewer side effects.
Just added! Belimumab (Benlysta®) Studies »
- EMBRACE: Efficacy and Safety of belimumab in African American, Black Race or Mixed Black Race Patients with Systemic Lupus Erythematosus (SLE)
- SABLE: Safety and Effectiveness of BENLYSTA® (belimumab) in Systemic Lupus Erythematosus Registry
- Belimumab (Benlysta®) Pregnancy Registry
The Belimumab (Benlysta®) Pregnancy Registry is to evaluate the health of eligible pregnant women with lupus who have received belimumab (Benlysta®) in the 4 months prior to and/or during pregnancy until they give birth, and to study the health of their babies until they are 12 months old.
Just added! 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).
Just added! STEADY: STudy Evaluationg Alx-0061 (Ablynx) for moDerate to severe sYstemic lupus erythematosus »
This study is not yet open for participant recruitment. See contact info on link if interested. 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.
Just added! 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 new project. Currently, waiting to see if the researchers need more participants.
Alliance for Lupus Research Clinical Trials Info Page »
Provides education lists and pamphlet about clinical trials in general, current and local clinical trials, drugs in trial phase, and FAQs
Clinical Connection »
Lupus clinical trials and medical research studies search engine.
Lupus Registry and
The LFRR is actively researching the different ways in which SLE affects various ethnic groups. Families with one or more living members diagnosed with lupus may be eligible.
Contact: Domenique Williams 888-655-8787 toll-free or
Seeking: + People with lupus and their families
+ Healthy participants
Asians with lupus and their families are encouraged to participate for a current study that is being conducted.
* The LFRR is sponsored by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS, a branch of the National Institutes of Health or NIH), They are the only research resource of multiplex lupus families in the world that scientists in the USA can apply to use in their own lupus research. See also Lupus Research Organizations below.
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.
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): http://www.lupus.org/clinicaltrials
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.
LFNC Clinical Trial List
Presents a listing of lupus clinical trials in CaliforniaLupus Research
Lupus Research Organizations
Alliance for Lupus Research (ALR)
Visit this website for the latest updates on lupus research sponsored by this organization. The ALR is a national voluntary health organization based in New York City that was founded in 1999 and is chaired by Robert Wood Johnson IV, a member of the founding family of Johnson & Johnson. The mission of the ALR is to support research into the cause, cure, treatment and prevention of systemic lupus erythematosus and its complications.
Lupus Family Registry & Repository (LFRR)
The LFRR is a long-term research project that:
- Operates in conjunction with the Lupus Genetics Studies
- Is sponsored by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS, a branch of the National Institutes of Health or NIH)
- Has the only research resource of multiplex lupus families in the world that scientists in the USA can apply to use in their own lupus research
- Keeps a collection of DE-IDENTIFIED materials from families with 2 or more members diagnosed with SLE
The Lupus Initiative
The Lupus Initiative® is a national education program designed to reduce health disparities experienced by patients with lupus. We develop educational resources for students and practitioners of medicine and the health professions – CME activities, case studies, a curriculum on lupus and health disparities, communication tools and more – to assist and support them in the diagnosis, treatment, and management of patients disproportionately affected by lupus based on race, ethnicity, and gender.
Lupus Research Institute (LRI)
The Lupus Research Institute is uniquely dedicated to novel research in lupus. Recognizing that most major medical breakthroughs come from unexpected directions, the LRI fosters and supports only the highest-ranked new science to prevent, treat and cure lupus.
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.
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.
UCSF Lupus Peer Support Group (for ages 15 - 23) [PDF]
Join the UCSF peer group and meet other teens and young adults with Lupus. Contact firstname.lastname@example.org or social worker, Caroline Hill, LCSW, at (415) 353-2858.
Thriving with Lupus: Support & Therapy Group for Women
Join us for an 8-week group for women living with Lupus. Whether you are newly-diagnosed or have lived with Lupus for years, this group will support you to cope, heal, and thrive.
San Francisco Scleroderma Support Group
Scleroderma Foundation: Northern California Chapter
Support group meets one Saturday per month from 10:30 am-12:00pm at the Western Addition Branch of the SF Public Library, Program Room, 1550 Scott St., San Francisco, CA 94115 (corner of Scott & Geary).
Contact: Ed Rayford Phone: (707) 365-5438
Nationwide Organizations & Programs
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 »
American College of Rheumatology (ACR): www.rheumatology.org
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.
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.
Association of Asian Pacific Sommunity Health Organizationshttp://www.aapcho.org
A national association representing community health organizations dedicated to promoting advocacy, collaboration and leadership that improves the health status and access of Asian Americans, Native Hawaiians, and Pacific Islanders within the United States, its territories and freely associated states, primarily through our member community health clinics.
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.
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:
- LANtern® (Lupus Asian Network) is a free national support and education program for Asian-Americans with lupus and their families.
- Teen and Parent Lupus Chat Groups are monthly in-person chat groups for teens with lupus and their parents.
- SLE Workshop is a monthly education and support group for people with lupus, along with their family and friends.
- LupusLine® is a free national telephone peer counseling service focusing on one-to-one support for people with lupus and their families
- Charla de Lupus (Lupus Chat)® is a free national peer health education and support program for Spanish-speaking communities with lupus.
- Cardiovascular Disease Prevention Counseling Program for HSS Lupus Patients provides cardiovascular disease assessment and education for HSS patients with lupus and/or positive antiphospholipid antibodies.
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
Social Media, Lupus Forums & Blogs
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.
Online patient matching to help patients share treatment experience. Then they use all patient data for research.
Huddles Together: Chronic Illness Mentorship
Connects newly diagnosed patients with a local community member who has also faced the challenges of a new diagnosis. If you've been recently diagnosed and you're wondering where to go next, email us and we'll match you with a mentor! We have mentors for Diabetes, Lyme, Lupus, Crohn's and ME/CFS.
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: http://www.caringbridge.org
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.
MDjunction - People Connecting People: http://www.mdjunction.com/lupus
We Have Lupus: http://forum.wehavelupus.com/forum.php
A well organized forum with topic discussions including newly diagnosed, symptoms, medications, and general questions.
Professional Services & Helpful Websites
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
Judy Burgio, R.Ph, C.N.
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
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.
Pacific Psychotherapy of San Francisco
Help for chronic illness
Jyoti M. Rao, MFT
870 Market Street, #469
San Francisco, CA 94102
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.
Goddess Hair Extensions and Replacement
Service Locations in San Francisco, East Bay, Peninsula, and San Jose
*See Lupus Hairloss in Handouts section
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.
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.
650.503.3737 or 720.470.8049
*See Three-Day Diet in Handouts section
THE INTERNET CHAMBER OF COMMERCE LISTINGS:
via Public Service Navigator
San Francisco Public Health Centers
Vitamin Supplements in California
California Vitamin Supplements section of the Internet Chamber of Commerce's Health & Wellbeing directory.
Handouts from Support Group Meetings & Education Days
The following contributions are PDF Documents unless noted.
Mediterranean Diet Cuts Death From Chronic Diseases [website]
MIND, BODY, SPIRIT-----------------------------------------------------------
ADDITIONAL LUPUS SUPPORT-----------------------------------------------