The organization and its mission
The Scleroderma Association of B.C., also known as SABC, was founded in 1984 by five patients diagnosed with scleroderma. SABC is an all-volunteer, registered charity created to support patients & their families. Our membership currently includes about 550 patients and their supporters.
Our Mission
Working on several fronts, the SABC has a three-fold mission:
- Support scleroderma patients by promoting patient outreach and education
- Raise public awareness and develop information tools for the general public and those in the medical community
- Encourage and support leading edge research in British Columbia and Canada
Patient Outreach and Education
Scleroderma Clinics at St. Paul’s Hospital and Mary Pack Arthritis Centre at VGH in Vancouver
Scleroderma patients in British Columbia are privileged to have access, by medical referral, to a Scleroderma Clinic, the only of its kind in western Canada. The Clinic evaluates and treats patients from all areas of the province. The clinic is engaged in several areas of research, including research into the mechanisms of scleroderma, the risks of progression, and evaluation of new potential therapies which the SABC is proud to support. For doctors only: referrals may be directed as to Dr. Hyein Kim – Fax: (604) 674-2329
Community Representatives
The Scleroderma Association of B.C. strongly believes in supporting people with scleroderma and their caregivers. Many people including newly diagnosed find it helpful to seek support from others living with scleroderma. There are dedicated community-based volunteers who can provide support and easy access to accurate and understandable information about scleroderma.
If there is not a contact in your community or area, you are welcome to contact the SABC office at 1-604-371-1005 or email: info@sclerodermabc.ca
Annual General Meeting and Educational Conference
If you are interested in joining us at next year’s fantastic educational experience, please watch for upcoming information.
Our meeting is held in October.
Awareness and Fundraising Campaigns
SABC advocates for the scleroderma community across the province and is committed to promoting disease awareness and improving the quality of life for all patients. Through advocacy, we aim to raise public awareness and rally support around the issues affecting the scleroderma community (eg. access to medications and specialists) to ensure our voice is heard and needs are met by government decision-makers. SABC not only serves as a support for scleroderma patients and their families, but also advocates with other associations, such as the Pulmonary Hypertension Association of Canada, for those who are affected by other diseases.
The month of June is Scleroderma Awareness Month. The SABC helps organize walks/rides and other campaigns across the Province to raise awareness and funds for research. The more who know about the disease, the more we may dismantle the fears of those affected and help health professionals gain a greater understanding about the pathology of scleroderma.
Get in touch with us
The Bulletin is a print magazine published through the support of, and collaboration with, Scleroderma Quebec and Scleroderma Manitoba. It is directed towards people with scleroderma, the general public and health care professionals.
We also produce and develop a semi-annual newsletter “The Sclerodata” with content tailored to people living with scleroderma.
We are reaching out to doctors and health professionals across British Columbia who will receive our publication. Considering that scleroderma is an orphan disease, the number of specialists who receive “The Bulletin” is of great importance to our organization, thereby demonstrating that this tool is used to assess and monitor the initiatives undertaken by SABC. while keeping the disease in the forefront of people’s hearts and minds.
The SABC can also be found on Facebook, Twitter and Instagram where we post updates about upcoming events and information about living with scleroderma. We also develop and distribute semi-regular newsletters with content about upcoming events, research news, patient stories, anecdotes and remedies.
We welcome and encourage written submissions to be shared in our newsletters and through our social media about any fundraising or awareness efforts you would like support with in your community. Many people find sharing their scleroderma journey empowering.