Ms. Marion Pacy, President,
The Scleroderma Society of Canada (SSC)

The Scleroderma Society of Canada originated in 1999 and was officially registered as a charity by the govern-ment of Canada in 2000. It is staffed entirely by volunteers who are dedicated to serving the interests of those concerned with the disease called scleroderma, or systemic sclerosis.

The mission of the Scleroderma Society of Canada is to promote awareness of scleroderma, to support research toward finding a cure and to provide support and infor-mation to those affected by the disease, and to support research dedicated to a cure and to improving quality of life for individuals with scleroderma and their loved ones.

The Society strives to achieve objectives based on three elements.

1. Awareness - to promote greater awareness of scleroderma
2. Support - to provide information to individuals and assistance to regional support groups
3. Research - to support scleroderma research

The Society provides a service to people through its own organization and through the regional support groups in Canada. It also provides a link to related organizations in Canada and in other countries.

Dr. Murray Baron, Director
The Canadian Scleroderma Research Group (CSRG)

The Canadian Scleroderma Research Group was founded in 2004 with startup funds from a CIHR Team Development grant. CSRG is a dedicated group of seventeen Canadian rheumatologists from across Canada under the direction of Dr. Murray Baron. In 2003, they came together and acknowledged the need to unite to better treat patients with Systemic Sclerosis. They were determined to better understand the disease, as well as better gauge its full medical and psychological impact on the life of people affected in order to better treat them.

The group's ultimate goal is to increase the capacity to perform research in Canada by creating a multidiscipli-nary, cross pillar team to perform high impact sclero-derma research. They work with scientists from inside and outside the field of scleroderma, and train new scientists in relevant scleroderma research.

With funding received from various agencies, including the Canadian Institutes of Health Research and the Fonds de Recherche en Santé du Québec, as well as Sclero-derma Society of Canada, Scleroderma Society of Ontario, Sclérodermie Québec and all other SSC' provincial Chapters, and Cure Scleroderma Foundation, CSRG has launched and maintains a database, in which they have collected information on over 1,000 patients from across Canada; the database includes over 2,000 biological, clinical and psychological variables, with the richness of its database the CSRG has shown, among other things, the magnitude or impairment scleroderma patients experience in various of quality of life domains, including physical, mental and social. Most importantly, CSRG has identified the aspects of the disease that have the greatest impact on quality of life from the patients' perspectives.