Who we are
About Scleroderma Manitoba
Whether you are newly diagnosed, or have been living with scleroderma for some time, whether your spouse or partner, child, parent, or family member has been diagnosed with scleroderma, or if your friend, co-worker, or employee has scleroderma, YOU are a part of the scleroderma community in Manitoba.
Scleroderma Manitoba hosts support groups for scleroderma patients and their families and supporters.
We are now holding online support groups due to Covid-19.
To learn more, click here.
*New info available about COVID-19 vaccination for scleroderma patients here.
For a summary and video link of the Scleroderma Manitoba Education Conference and AGM, held on October 3, 2020, please click here.
Scleroderma Manitoba was founded in 1993 by Harriet Carter, who had been diagnosed with scleroderma. Scleroderma Manitoba is an all-volunteer, registered charity created to support patients and their families. Our membership currently includes about 200 patients and their supporters.
Working on several fronts, Scleroderma Manitoba has a three-fold mission:
- Support scleroderma patients by promoting patient outreach and education
- Raise public awareness and developing information tools for the general public and stakeholders in the medical community
- Encourage and support leading edge research in Manitoba and Canada
Scleroderma Manitoba 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. Scleroderma Manitoba 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.
Scleroderma Manitoba provides support to patients
Scleroderma Manitoba helps 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.
Scleroderma Manitoba 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 The Bulletin, which features articles about research in Manitoba and other provinces, as well as helpful tips to help patients deal with the disease in their everyday life.
We welcome and encourage written submissions to be shared in this Bulletin 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.
Become a volunteer
Raise public awareness and understanding of scleroderma.
Awareness and Fundraising Campaigns
Scleroderma Manitoba organizes a walk in Winnipeg and other campaigns in the Province to raise awareness and funds for research. The more people who know about the disease, the more we may dispel the fears of those affected and help professionals gain a greater understanding of the pathology of scleroderma.
AGM & Educational Conference
The next Annual General Meeting and Education Conference has been adapted for the pandemic and will be virtual. It will be held on October 3, 2020. Please join us at this year’s fantastic educational experience.
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 Manitoba 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 Scleroderma Manitoba while keeping the disease in the forefront of people’s hearts and minds.
To review the laws and bylaws of Scleroderma Manitoba please click here.