BC LUPUS SOCIETY
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Mission Statement
Formed in 1977, the BC Lupus Society is one of the oldest Lupus not-for-profit organizations in Canada. We are dedicated to conquering one of the most unpredictable and devastating diseases, while giving caring support to those who suffer from its brutal impact. Children, women and men can all get lupus and there is no cure. The BC Lupus Society supports people affected by Lupus, creates public awareness, and contributes to advances in research. As active participants in the community, our volunteer network and programs enable us to transfer knowledge on all aspects of lupus into the public domain through our symposiums, social media, websites, literature and support group meetings. We are the only organization providing lupus education and support services to an extended community of over 40,000 British Columbians living with lupus. BC Lupus Society receives only small funding from the BC provincial government and no funding from federal sources.
About This Cause
The BC Lupus Society (BCLS) offers programs which include lupus education, support, and public awareness. We sponsor our BC Lupus Society research scholar (Dr. Antonio Aviña) and support clinical and basic science lupus research in BC and across Canada. Our programs are made possible through revenue from donations and fundraising activities and the efforts of many volunteers throughout BC. The programs benefit an estimated 40,000 BC residents including patients and their network of family and caretakers. The program is effective in reducing disability and the economic burden of social and health care costs. We reach thousands monthly through social media and our website. BC Lupus has delivered programs for over 40 years. BC Lupus Society has been working to provide education and support to people affected by lupus and to create awareness of lupus. Our Administrators spend the majority of their time coordinating and supporting BCLS programs designed to achieve these goals. Since the BCLS is a volunteer-based organization for much of the province, we rely on our Office Administrators/Member Coordinator to provide a consistent point of contact for the general public and our membership. The Member Coordinator is in direct contact with our membership on a regular basis, communicating about our services and obtaining feedback to ensure that the BC Lupus Society is indeed providing services that aid member patients in living well with lupus. We offer education and awareness activities such as speaking on the phone to newly diagnosed, handling lupus inquiries, distributing information to people about lupus and the BC Lupus Society, managing the membership program, providing support and information to our volunteer provincial contacts, coordinating the distribution of awareness and support materials and education events, managing the newly diagnosed programs and coordinating symposium event tasks etc. Our office administrators man information tables at health conferences, meet with patient support groups, liaise with medical and research personnel in order to provide up to date and relevant information to lupus patients and caregivers in communities throughout the province. NEWLY DIAGNOSED / SUPPORT GROUP PROGRAM The Newly Diagnosed Program for Lupus patients in BC is a core service program. The program provides a source of support at the time of diagnosis through access to relevant information and education on lupus and its management. Individual components are delivered through a printed information package, online information, group education and information sessions, and one on one action-plan meetings aimed at enhancing quality of life. We provide posters, brochures and LCD screen program ads for use in medical laboratories, printed materials for the newly diagnosed kits, meeting room rentals and coordinators time. The goals of the newly diagnosed program are to proactively identify newly diagnosed lupus patients, to help sustain their quality of life following diagnosis, to provide consistent information and guided support. The program will ensure that the newly diagnosed patient receives current, clear, written information about lupus including the potential impact of lupus and its management, as soon as possible after diagnosis. This will allow the lupus patient to gain perspective quickly, achieve increased knowledge of the different aspects of lupus, health care services, treatment options, attain increased confidence, motivation and skills in self-managing lupus now and in the future, be reassured that there is ongoing information and assistance to help one live with lupus. Through Support Groups Programs we have provided resources for lupus patient support groups throughout the province for over 42 years. We offer support group leader education and training, speaker travel and honorarium, meeting rooms and light refreshments on speaker nights. LUPUS SYMPOSIUM Our very successful Lupus Wellness and Education Symposium is an annual education event that brings together international lupus experts to speak about the effects and the latest treatments for lupus. This is a highly anticipated and well-attended event for members of the lupus community and many others whose lives are touched by lupus. Expanded promotion has resulted in doctors, new lupus patients and interested public joining long term members at the symposium. Volunteer provincial contact and support group leaders meet to share ideas and experience of how best to support people affected by lupus. Lupus experts converse, leading to better collaboration in treating lupus. Presentations are videoed and are available to medical professionals and ancillary medical staff as well as to patients. This broad dissemination of information alerts doctors, patients, and family members to recognize lupus before it causes permanent organ damage. Our Lupus Symposiums are video conferenced to hospital lecture theatres throughout BC where patients, medical students, nurses and doctors participate in our symposium. The live symposium takes place at St. Paul’s Hospital lecture theatre in Vancouver. Each year we endeavour to reach communities throughout the province via remote video conferencing. LUPUS LIGHTHOUSE The Lupus Lighthouse quarterly newsletter is prepared by the Office administrators and has been in publication since 1979. It contains important data about lupus, how to cope with the disease, and benefits patients, caregivers and medical professionals through the wide variety of information on lupus. Over 600 copies are sent to members and medical offices quarterly. Additional copies are given out at awareness events throughout the year. We are one of the few patient organizations who still endeavour to provide patients with written materials including newsletters. We recognize that many of those suffering with lupus are not physically able to work with technology because of financial or physical constraints. PUBLIC AWARENESS World Lupus Day occurs in May, Shed Light on Lupus day is 3rd Sunday in July, and October is Lupus Awareness month. During these 3 periods in particular, the Lupus Society focuses efforts to increase the awareness of lupus within the province of British Columbia. We advertise in community and daily newspapers, as well as health and wellness magazines throughout the province. In order to help people understand the symptoms of lupus and to seek treatment before permanent organ damage occurs, BCLS uses a variety of tools to reach the general public in BC. We provide posters, brochures, community newspaper advertisements, radio interviews, public service announcements to promote awareness of lupus. Booths in malls and at medical conferences prove to be an effective way to display our material and provide direct contact with those who want to talk about lupus. We also show lupus public service announcements on waiting room screens in medical laboratories. The BC Lupus Society plays a primary role in ensuring that this chronic disease remains financially manageable to the benefit of all residents in the whole of BC. Authorized research published in 2011 (taken directly from BC Medical data) shows that the economic burden of the relatively small number of lupus patients in BC is $182 million for hospital stays, specialists’ appointments and prescription medication only - this huge cost does not include all the other sundry services and expenses that a lupus patient incurs. The BC Lupus Society is doing our part to help lupus patients in the myriad of other ways that would be prohibitively costly if directly offered / paid by the BC government. Lupus patients and their extended personal lupus network including family and caregivers, benefit greatly from our services.