The Organization and its mission
The SOCIÉTÉ DE LA SCLÉROSE SYSTÉMIQUE (SCLÉRODERMIE) DU QUÉBEC INC., also called SCLERODERMA QUEBEC was founded in 1989 by Mr. Gilles Houlé and his wife, Suzanne Houlé. It was registered as a charity (no. 89808 9693 RR 0001) with the federal Government in 1992.
Scleroderma Quebec is governed by a Board of Directors composed of volunteers, the focal point around which revolve several committees, all dedicated to actively pursue the organization’s mission. Scleroderma Quebec has over 900 members and donors.
A multi-faceted mission
The ultimate objective: defeat the disease
Working on several fronts, the organization has made its mission to:
- Help scleroderma patients by providing medical or moral support;
- Raise funds for scleroderma research;
- Develop information tools for the general public and stakeholders in the medical community.
Scleroderma Quebec provides support to patients
Present throughout Quebec, our self-help and support groups help break the sense of isolation many scleroderma patients experience. Either by email, by phone or during activities/meetings, it is possible for those affected by the disease to share issues and concerns with others. In addition, the main objectives of our nurse are to promote healthy living, answer questions, as well as provide useful information that enable people with scleroderma to better cope with their illness and improve their daily quality of life.
Here are a few of the many activities carried out by our nurse
and support groups:
- Responding to inquiries from scleroderma patients pertaining to their health condition;
- Developing and maintaining strong links with health professionals;
- Collaborating to research;
- Developing and creating communication tools about the disease;
- Recruiting volunteers;
- Organizing meetings and finding expert speakers;
- Preparing and searching for relevant and useful articles about scleroderma with links to additional resources.
We all have concerns and questions about scleroderma, whether we are a scleroderma patient, a relative or a healthcare professional.
- What are the early warning signs of scleroderma?
- How can we enhance the quality of life of scleroderma patients?
- What are the different challenges facing scleroderma patients and their families?
These are but a few of the issues that Scleroderma Quebec is addressing through its support groups and nurse.
Scleroderma Quebec funds leading-edge research
Firmly convinced that hope lies in research, Scleroderma Quebec funds research projects aimed at finding the cause, better treatments, and a cure for scleroderma. Thanks to our first fundraising campaign that ended 3 years ago, Scleroderma Quebec has established the only Scleroderma Research Chair in Canada and contributed nearly $2 million to research.
In collaboration with the Université de Montréal and the CHUM, Scleroderma Quebec has established the Scleroderma Research Chair, whose current holder is Dr. Senécal. The specific objective of the Chair is to conduct research aimed at improving the quality of life and life expectancy of scleroderma patients and, ultimately, defeating the disease.
It is worth stressing that this Scleroderma Research Chair, the only one of its kind in Canada, relies entirely on the financial support of our organization.
Scleroderma Quebec informs and raises awareness
One of the organization central mandates is to gather as much data as possible about the disease in order to provide relevant, accurate and timely information to scleroderma patients and health professionals. The more we know about the disease, the more we may allay the fears of those affected and help specialists gain a greater understanding of the pathology of scleroderma.
The magazine The Bulletin
A reference document, with a circulation of nearly 6,000 copies, Le Bulletin is a print magazine (available in French only) published twice a year, in the spring and fall. It is directed towards people with scleroderma, the general public and health professionals.
More than 4,000 doctors and health professionals receive our publication. Considering that scleroderma is an orphan disease, the number of specialists who receive Le Bulletin is of great importance to our organization, thereby demonstrating that this tool is used to assess and monitor the initiatives undertaken by Scleroderma Quebec while keeping the disease in the forefront of people’s hearts and minds.
Scleroderma Quebec is working together with the Quebec community to advance its mission and achieve its objectives. Individuals and businesses from all backgrounds can help our charity by making a donation or by participating in our fundraising events. It is thanks to the support, motivation and generosity of all the volunteers, donors, partners and researchers that Scleroderma Quebec is able to contribute as much to research and provide services to scleroderma patients.
History of the Organization