Consumer Organizations

Consumer organizations are often national or provincial organizations led by volunteers devoted to improving the lives of people living with a certain condition. Consumer organizations often contain a wealth of information on resources including programs, educational materials and may also offer support services. This section contains information on peer support and information that may be of use to people living with arthritis.

Consumer Organizations include:

 

Arthritis Consumer Experts (ACE)

Arthritis Consumer Experts (ACE) is a national organization led by people living with arthritis, its community members and an expert advisory board made up of leading arthritis health care providers, research scientists and people with arthritis informed about issues affecting others living with the disease. Organizational goals are to:

  • Educate people with arthritis, helping to empower them to take control of their disease and improve their quality of life
  • Provide people with arthritis, their family members and friends and governments with evidence-based information in easy-to-understand language
  • Provide research decision-making training to people with arthritis to help them participate meaningfully
  • Work in coalition with people with arthritis and other health care consumers and organizations to reform Canada's health care programs and policies to better meet the needs of people living with arthritis
  • To support and work with individual arthritis activists and the arthritis community to articulate their views to federal and provincial governments to reform and/or develop health care policies that affect the public with arthritis.

Arthritis Consumer Experts was founded in 2000 by Cheryl Koehn, a person living with rheumatoid arthritis and a leading arthritis activist in Canada. The organization is privately owned but operates like a non-profit. It offers all of its programs and services for free through unrestricted grant funding, and monies remaining at the end of the year are reinvested in the work planned for the following year. Funding is controlled in entirety by ACE, and work carried out is guided by the organization’s advisory board and staff and abides by the following Guiding Principles:

Guiding Principles
Health care is a human right. Those in health care, especially those who stand to gain from the ill health of others, have a moral responsibility to examine what they do, its long-term consequences and to ensure that all may benefit. The support of this should be shared by government, citizens, and non-profit and for-profit organizations. This is not only equitable, but is the best means to balance the influence of any specific constituency and a practical necessity. Any profit from our activities is re-invested in our core programs for people with arthritis. To completely insulate the agenda, the activities and the judgments of our organization from those of organizations supporting our work, we put forth our abiding principles:
  • ACE only requests unrestricted grants from private and public organizations to support its core program
  • ACE employees will not receive equity interest or personal “in-kind” support of any kind from any health-related organization
  • ACE discloses all funding sources in all its activities
  • ACE identifies the source of all materials or documents used
  • ACE develops positions on health policy, products or services in collaboration with arthritis consumers, the academic community and health care providers and government free from concern or constraint of other organizations
  • ACE employees do not engage in any personal social activities with supporters
  • ACE does not promote any “brand”, product or program on any of its materials or its web site, or during any of its educational programs or activities.

 

Acknowledgement

 

Over the past 12 months, ACE received unrestricted grants-in-aid from: Abbott Laboratories Ltd., Amgen Canada / Wyeth Pharmaceuticals, Bristol-Myers Squibb, Canadian Arthritis Network, GlaxoSmithKline, Merck Frosst Canada, Pfizer Canada, Hoffmann-La Roche Ltd. Canada, and Schering Canada.

ACE thanks these private and public organizations.

 

To learn more about ACE, please visit www.arthritisconsumerexperts.org

 

Canadian Arthritis Patient Alliance (CAPA)

CAPA is a grass-roots, patient-driven, national advocacy organization with members and supporters across Canada. It creates links between Canadians with arthritis, assists them to become more effective advocates and seeks to improve the quality of life of all people living with the disease. CAPA believes the first expert in arthritis is the person who has it. The organization communicates the latest in health policy issues and knowledge gained from research through its newsletter. Members collaborate and network extensively with other organizations and individuals, and work with federal, provincial and territorial government representatives to achieve CAPA's strategic priorities:

  • To raise awareness about arthritis to ensure timely and uniform access to appropriate medications, health professionals and services.
  • To ensure a meaningful voice in arthritis research at all decision making levels, and to develop a strategy to increase CAPA involvement in policy planning and development.
  • To create a source of information for adults and children with arthritis and their support communities.
  • To assist adults and children in obtaining access to care and reimbursement, and other services they require to cope with or prevent disability, deformity and pain

To contact CAPA, visit their website at www.arthritispatient.ca

 

The Arthritis Society

The Arthritis Society, BC & Yukon Division, is a volunteer-led, progressive, not-for-profit organization committed to excellence and leadership in research, care, education and advocacy for people with arthritis. As a donor-funded organization, TAS BC raises more than $5 million annually to support arthritis-related research, programs and services. TAS BC is a provincial division of the national organization, The Arthritis Society.

 

TAS BC is the primary source of arthritis resource information for the 600,000 people in BC with arthritis. TAS delivers arthritis health promotion and educational programs such as:

For a brochure on The Arthritis Society’s Programs and Services, click here.

 

Support Services such as:

  • Arthritis Answer Line: 604-875-5051 or Toll free: 1-800-321-1433 or Email at info@bc.arthritis.ca
  • Regional Arthritis Learning Centres. The Arthritis Society has regional Arthritis Learning Centres in Kelowna, Langley, Victoria and Vancouver. These Arthritis Learning Centres serve people with arthritis across BC. Each Centre provides information and links to local programs, offers education and support opportunities to communities within their regions as well as access to arthritis-related resources for those wanting to learn more about arthritis whether they are persons with arthritis, health professionals, students or family members.
    • Fraser 101-5501 204 St. Langley, BC V3A 5N8 Phone: 604-514-9902 Fax: 604-514-0401
    • Vancouver Island 2680 Richmond Road Victoria, BC V8R 4S9 Phone: 250-519-4000 Fax: 250-598-1900
    • Coastal/Northern 895 West 10th Avenue Vancouver, BC V5Z 1L7 Phone: 604-875-5002 Fax: 604-875-5048
    • Interior 150A-1855 Kirschner Rd. Kelowna, BC V1Y 4N7 Phone: 250-868-8643 Fax: 250-868-0779
    • Division Office 200-1645 West 7th Avenue Vancouver, BC V6J 1S4 Phone: 604-714-5550 Fax: 604-714-5555 1-866-414-7766
  • The Arthritis Registry – you can join The Arthritis Registry and receive an information package tailored just to you and your concerns. The Arthritis Registry also includes tips for exercises to increase mobility and flexibility, regular updates on the latest in arthritis advances in research, care and education, and invitations to arthritis events in your area. Visit The Arthritis Society website to complete the registry form or call 1-866-414-7766 and a copy will be mailed out to you.

  • Community Groups

 

Other Societies

There are other Societies that are more disease-specific. They are listed here

 

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