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The Scleroderma Association of B.C. 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 450 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 Clinic at St. Paul’s Hospital 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. James Dunne – Scleroderma Clinic Tel: (604) 732-4993

 

Community Representatives

Throughout British Columbia, our Community Contact Representatives help break the sense of isolation many scleroderma patients experience. Either by email, by phone, or during meetings and activities, it is possible for those affected by the disease to share issues and concerns.

BECOME A  VOLUNTEER

 

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.

 

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) 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.

This year we supported fundraising events in Kamloops, Vancouver, Victoria & Valemount and have supported events in these and other communities in previous years as well. For more information on the fundraising events in your community, click here.

 

Communication

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 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 and twitter 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.

 

RESEARCH