The alphabet soup of advocacy

Many people ask: “Why are so many consumer organizations involved in arthritis?” The reason is simple. Different organizations have different goals. It has everything to do with arthritis being an umbrella term for over 100 different forms of arthritis, and that four million Canadians live with its impact. Also asked by many arthritis consumer organizations is: “Do we need to do arthritis advocacy?” My short answer is, “No”. However, if we want to raise awareness of arthritis, I suggest that every person living with the disease become an advocate.

Advocacy is about education. It can be as simple as talking about living with the disease with your family, co-workers, friends and neighbours. Telling people how your daily activities are impacted by arthritis is, effectively, advocacy - sharing your knowledge and your experience of the disease with others. Advocacy kills the myth that arthritis is part of the normal aging process.

Now the alphabet soup! In our modern world, we often refer to organizations by acronyms. Arthritis organizations are no different. There are many TLA’s¹ or FLA’s². Here are a few related to arthritis in Canada and the rationales for their existence:

TAS

The Arthritis Society. Raises money to fund arthritis research and develop/deliver programs for people living with arthritis. http://www.arthritis.ca

CAPA

Canadian Arthritis Patient Alliance. Helps people living with arthritis to become better advocates. http://www.arthritis.ca/capa

ACE

Arthritis Consumer Experts. Provides evidence-based arthritis education through workshops and a monthly newsletter.http://www.arthritisconsumerexperts.org

CAN

Canadian Arthritis Network. This is an organization aimed at arthritis research. They have consumers involved through the Consumer Advisory Council (CAC). http://www.arthritisnetwork.ca

ARC

Arthritis Research Centre of Canada. Is a Vancouver based arthritis research center devoted to practical research for every day living. Consumers are involved through the Consumer Advisory Board (CAB) http://www.arthritisresearch.ca

CMSG

Cochrane Musculoskeletal Review Group. Disseminates arthritis research results for the general public. The consumer group is CCNET http://www.arthritis.ca/look%20at%20research/cochrane%20reviews/default.asp?s=1

CIHR

Canadian Institutes of Health Research is a federal government funding agency for health research. http://www.cihr-irsc.gc.ca

IMHA

Institute of Musculoskeletal Health and Arthritis is one of the 13 Institutes of CIHR. http://www.cihr-irsc.gc.ca/e/13217.html

CRA

Canadian Rheumatology Association represents Canadian rheumatologists and promotes their pursuit of excellence in arthritis care and research in Canada. http://www.cra-scr.ca

CRRC

Canadian Rheumatology Research Consortium is an organization of Canadian rheumatologists taking a leadership role in coordinating rheumatology clinical trials across the country. http://www.rheumtrials.ca

BMC

Best Medicines Coalition is a group of consumer and advocacy organizations focusing on reform of Canada's drug review. http://www.bestmedicines.ca