Resources
What is Lupus?
What is Lupus?: http://lfnc.org/what_is_lupus.html
The 11 Criteria: http://lupusresearchinstitute.org/lupus/lupus_diagnosis
How Lupus Affects the Body: http://www.lupus.org
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.
Clinical Trials
MEDI 545 Phase II Study (MI-CP179)
http://www.clinicaltrials.gov/ and enter the identification number: NCT00657189
The MEDI 545 Phase II Study (MI-CP179) will evaluate the safety and tolerability of an investigational new drug for people with moderately to severely active lupus. Study participants must be at least 18 years old and have a positive ANA test. In addition, participants must not be pregnant or planning to become pregnant. For more information about this study, you can visit www.clinicaltrials.gov and enter the study identification number: NCT00657189.
The Access Clinical Trial for Lupus Nephritis: http://www.lupusnephritis.org/
LFA Center for Clinical Trials Education: http://www.lupus.org/clinicaltrials/
Learn more about participating in clinical trials and find resources. Using the CCTE, you may also ask questions about clinical trials or share your experience.
Lupus Research
Alliance for Lupus Research (ALR): www.lupusresearch.org
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 Research Institute: http://www.lupusresearchinstitute.org/
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 Program: http://pages.medicine.ucsf.edu/lupus/
Visit this site for the latest clinical trials and research on lupus by UCSF. This program is composed of a multi-disciplinary group of health care professionals who share a common vision: to find safer, more effective therapies for lupus and to improve the quality of life of patients living with lupus.
Organizations & Programs
The Lupus Foundation of Northern California (LFNC): www.lfnc.org
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.
Lupus Foundation of America, Inc. (LFA): www.lupus.org
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.
Arthritis Foundation: www.arthritis.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: http://www.asianhealthservices.org
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 Organizations: http://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:
Trends in Deaths from Systemic Lupus Erythematosus - United States, 1979-1998
http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5117a3.htm
Cross Cultural Health Care Program: http://www.xculture.org
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.
LANtern (Lupus Asian Network) (Hospital for Special Surgery)
http://www.hss.edu/LANtern.asp
National Lupus Awareness Campaign
http://www.womenshealth.gov/lupus/
Lupus Connections
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.
Charla de Lupus: (Lupus Chat) (Hospital for Special Surgery)
http://www.hss.edu/CharladeLupus.asp
MDjunction - People Connecting People: http://www.mdjunction.com/lupus
Lupus Forum
Teen and Parent Lupus Chat Groups: (Hospital for Special Surgery)
http://www.hss.edu/LupusTeenParent.asp
A monthly in-person chat group for teens (14 to 18) who have lupus and their parents.
We Have Lupus: http://forum.wehavelupus.com/forum.php
A well organized forum with topic discussions including newly diagnosed, symptoms, medications, and general questions.