Lupus Community Health/Medical and Support Sites


Alliance for Lupus Research "Our mission is to prevent, treat and cure lupus through medical research. 100% of all donations go to support medical research."
ALT.SUPPORT.LUPUS North East Lupus Group site Lupus UK (an excellent information resource)
ALUA Asociación Lupus Argentina "Revista de ALUA basada en notas cientificas de especialistas de nuestro país y de Asociaciones de Lupus de distintas partes del Mundo."
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.”
American Autoimmune Related Diseases Association “AARDA is the only national organization dedicated to addressing the problem of autoimmunity, the major cause of chronic illness.”
American College of Rheumatology “is an organization of physicians, health professionals, and scientists that advances rheumatology through programs of education, research, and advocacy that foster excellence in the care of people with arthritis and rheumatic and musculoskeletal diseases.”
American Pain Foundation "Our mission is to improve the quality of life for people with pain by raising public awareness, providing practical information, promoting research, and advocating to remove barriers and increase access to effective pain management." (Pain Info Center, Pain Action Guide and Pain Care Bill of Rights)
American Fibromyalgia Syndrome Association "is the only charitable organization whose primary mission is to seed research in FMS and CFS. We acknowledge that patient and physician education, public awareness and advocacy are all important ingredients in aiding the lives of people with FMS and CFS."
British Sjogren's Syndrome Association "is a self-help group for people with SS. It aims to spread information about the disease and how to alleviate its symptoms. The quarterly Newsletter provides a regular up-dating of information on current research and a forum for the exchange of views on how best to cope with the problems of living with Sjogren's Syndrome."
Celiac.com “The Celiac Disease and Gluten-free Diet Support Page provides important resources and information for people on gluten-free diets due to celiac disease, gluten intolerance, dermatitis herpetiformis, wheat allergy, or other health reasons. Celiac.com offers key gluten and wheat-free on-line resources that are helpful to anyone with special dietary needs.”
Celiac Disease Foundation "CDF provides support, information and assistance to people affected by Celiac Disease/Dermatitis Herpetiformis (CD/DH. CDF increases awareness among the general public. CDF works closely with health care professionals, pharmaceutical and medical industries. This cooperative effort puts CDF at the forefront of CD/DH care and research, helping us to aid and benefit those affected."
Cyndee Miller's Lupus Home Page (This site has many worthwhile links and Cyndee's own story of living with lupus for 38 years. Like me, she's been wrassling with Ol Wolfie long enough to pin him down now and then and learn a few of his tricks. This site, her story and her efforts on our behalf deserve your attention)
Disinissues "The purpose of Disinissues is to share information and advice about the processes of applying for, appealing, and renewing Social Security Disability Insurance (SSDI), Supplemental Security Income (SSI), and private long-term disability insurance." (Yahoo Group)
Dr. Nelson's Osteoarthritis Page "I believe that the key part of treating osteoarthritis is patient education, which is why I created this website and wrote this paper. Once the patient understands what is going on, they can take charge of managing their condition. Osteoarthritis cannot be made to go away; getting younger is the only thing that will do that (we are working on it!). Osteoarthritis is not "cured", but managed. Patient involvement in that management is key."
DrWeil.com (Information on food as medicine, the use of herbs, supplements, discussion forums and a personalized line of nutritional products)
DrWeil.com’s lupus Q & A archive (a must-read, with valuable information on our nutritional do’s and don’ts. Also provides links to lupus related syndromes and their needs)
European Lupus Erythematosus Federation "The members of ELEF are the national organisations of Lupus Groups in Europe. At this moment there are 15 countries with 16 organisations and about 16.500 patients represented:"
Faces of Lupus "… shows the many faces of this unpredictable illness. Lupus receives far less attention and funding than other illnesses yet more people have lupus than AIDS, cerebral palsy, multiple sclerosis, sickle cell anemia, and cystic fibrosis combined. There are currently 255 faces on the site and anyone with lupus is welcome to add their face. (You don't need a scanner or digital camera!)" (see yourself in others’ faces, add your own and show the world that the true face of lupus is humanity)
Fibrohugs "Fibromyalgia Related Illnesses such as MS & Lupus... the largest interactive Fibromyalgia site that is truly designed for the entire Family… Monitored Chats & Forums, Member Submissions, Research Results, Tons of Information, and the sincere unconditional love and support we offer each person that visits this site."
FIBROMYALGIA (and CFS) BASICS The Fibromyalgia Network "Fibromyalgia Network is not only the name of a newsletter publication on FMS, but it also stands for a small group of patient advocates who maintain this Web site and answer a toll-free phone number for people living within North America." (newsletters, Specialty Packets, MD referrals, online store)
Get Into The Loop with The Lupus Research Institute (LRI) and its National Coalition of state and local patient organizations. Actor James Garner, whose daughter has lupus, is the spokesman.
Global MedNet "The largest worldwide hospital and health care provider directory on the Internet. Search your hospital online by name, country, state and location... comprehensive list of physicians, dentists, and other health care professionals on the World Wide Web. Locate your doctor in Cyberspace, online databases.."
HealingWell.com - Lupus Library (information, resources and numerous articles on lupus and related medical conditions. A reliable and extensive base for study)
Hospital for Special Surgery "Information on rheumatoid arthritis, osteoarthritis, lupus, osteoporosis, and other rheumatic diseases from a world academic leader in patient care and research in musculoskeletal medicine"
Hughes Syndrome Foundation "Just 20 years ago, in 1983 Dr Graham Hughes and his team in London described in detail a condition now known as Hughes Syndrome and often known as ‘sticky blood’, in which there was a danger of thrombosis. The Hughes Syndrome Foundation was set up to help promote awareness of this condition and to help fund medical research into what is now known to be a major and common medical condition… to provide information and support for patients, and it is also working to make the medical profession more conscious of ‘sticky blood’ – how to diagnose and treat it. Please find attached two patient case histories."
IBS Tales Irritable Bowel Syndrome: Articles and Information. A very resourceful site.
Lupus in Black Women at ALL ABOUT BLACK HEALTH “… As many as 1 in 250 young black women will get the disease… a website that keeps you informed on health related issues as they affect Blacks and minorities at risk, for the betterment of their lives.”
Lupus: A Patient Care Guide for Nurses and Other Health Professionals
(this is an absolutely excellent series, with important information for those with lupus, their families, caregivers and medical support professionals. From the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) an American government agency.)
The Lupie Bin (a true labor of love by Julie, a very dedicated and dear lupie. Visiting this site is like dropping in on an old friend and catching up on family news. Among TLB’s many and varied pages, you’ll find the "What’s New With Lupus" pages, a page in Spanish, with links and loads of lupie stories to read.)
The Lupie Bin Message Board at MSN groups is also Julie's inspiration. This is a members only group to protect the privacy of posters and requires registration.
Lupus Canada "Lupus Canada, as a national voluntary organization, in partnership with its members, promotes research to find the causes and a cure for lupus; advocates on behalf of the lupus community; facilitates and coordinates education and public awareness; and supports organizational growth and development."
Lupus Chronicle (a remarkably well done lupie owned and run publication, featuring articles by lupie authors, personal lupie stories, lupie spouse’s stories, Laugh Lines and Life Lines, along with current lupus news. TLC is smart, funny, innovative and educational, all at once. I was once the featured writer at TLC, and I’m pretty darn picky - Linda and her loyal lupie crew put out a true gem.)
Lupus Clinical Trials (find out what trials are going on and coming up)
Lupus Foundation of America, Inc. (LFA) (the eminent national and international pioneer in support of lupies and lupus research. Most activists here are volunteers, committed to lupus awareness. LFA offers support, research, articles, links, newsletters and Lupus Now magazine)
Lupus Foundation of America Online Support Groups List page
Lupus Foundation of America Chapter Locator (find a chapter in your community, with the U.S.)
LFA's List of International Lupus Groups (find a lupus group in your country)
Lupus Meetup International Lupus Meetup Day. "People affected by lupus worldwide and friends... Meetup ... for support, info and conversation. Meet locally the 3rd Tuesday of every month."
Lupus Multiplex Registry and Repository (collecting family information for genetic studies, in an effort to decode lupus DNA. They’re seeking American families with two or more members who’ve been diagnosed with lupus. The LMRR hopes we’ll all participate and they’re especially looking for families with African American and Native American ancestry. This very important Oklahoma Medical Research Foundation study is sponsored by the National Institute of Health, Musculoskeletal and Skin Diseases)
Lupus Nephritis National Kidney and Urologic Diseases Information Clearinghouse "provides information about diseases of the kidneys and urologic system to people with kidney and urologic disorders and to their families, health care professionals, and the public."
LupusOhio (this active and interactive site offers a large Lupus Information Library, forums and The Lupus Sundial, an interesting, educational newsletter and a fine reading resource. No matter where you live, this site, its newsletter and many other services will benefit you)
The Lupus Site (A popular internet hub of medically based information and support. The original home of Butterfly News, which became Butterfly NewsBytes. TLS has a variety of message boards, current research and so much more to offer. Previously known as Joanne's’ Lupus Site)
The L U P U S web site LUpus Patients Understanding & Support (Roz has organized encyclopedic documentation, with most contributed by doctors and professors. Because of this site’s long standing support for the St. Thomas Hospital Lupus Unit, much of their research is published here. Message boards include Diagnosis, Symptoms, Medication and Therapy, Emotional/Psychological and a Teens with Lupus board)
Lupus Trust of New Zealand "We are committed to understanding and supporting people with Lupus and related autoimmune diseases."
Lupus UK "LUPUS UK is the only national registered charity supporting people with systemic lupus and discoid lupus and assisting those approaching diagnosis. We presently have over 7,500 Members and 30 Regional Groups who arrange medical talks, publish local newsletters, set up local occasions and organise fundraising events. LUPUS UK also produces an informative national magazine with lupus articles, letters, reports, and photographs, and operates a strong Grant Programme for research purposes and welfare."
LWLupus Yahoo Group. This is the original widely popular Living With lupus e-group, smaller and cozier at its new site.
MedicineNet Systemic Lupus Main Index "The MedicineNet doctors have carefully compiled the related articles…" (links to medical information on symptoms, tests, diagnosis, medications, pregnancy, healthy lifestyle, related syndromes and much more)
MS MuSings online magazine "By and For Those with MS, Multiple Sclerosis" and one of the World's
Top MS websites.
National Fibromyalgia Association (in-depth info, support, a store and more)
National Network of Libraries of Medicine "Consumer Health Information... Multilingual Consumer Health Information"
Raynaud’s Association "Support, Advice and Resources"
Sjögren's Syndrome Foundation "… practical information and coping strategies that minimize the effects of Sjögren's syndrome... the clearinghouse for medical information and is the recognized national advocate for Sjögren's syndrome."
St. Thomas' Lupus Trust "Welcome to the official website of the St. Thomas' Lupus Trust and Dr. Graham Hughes. This website contains information for medical professionals, patients and supporters."
3 Autoimmune Diseases Share a Genetic Defect, Scientists Find (Tucker Library Link)
WeHaveLupus.com “The purpose of our We Have Lupus is to provide a free meeting place online for emotional and information support of Lupus patients and their families. Our admin and moderators on the bulletin board are volunteers here to help with questions and to strengthen the faith of those afflicted with Lupus.”
- posted by Shar @ 3:15 PM