ABOUT US

Our Vision:

We believe in a brighter future for those affected with and by Mucopolysaccharide (MPS) and related lysosomal diseases.  We envision a future where patients no longer die from MPS and related diseases because treatments have been developed, cures have been discovered, and our government has made these treatments and cures accessible to those who need and deserve them.  In the future we envision, those affected are living long, healthy and fulfilling lives - enjoying the company of their friends, children and grandchildren.

Our Mission:

Founded in 1984, The Canadian Society for Mucopolysaccharide and Related Diseases Inc. (The Canadian MPS Society) is committed to providing support to individuals and families affected with MPS and related diseases, educating medical professionals and the general public about MPS, and raising funds for research so that one day there will be cures for all types of MPS and related diseases. The Society is a registered charity governed by its Board of Directors with the support and expertise of its Medical Advisory Board.

Our Values:

The Canadian MPS Society values:
• community and compassionate support
• health and wellness
• justice and equality
• education and awareness
• research and innovation
• accountability and transparency

Support for Families.
Research for a Cure.

Support:

The Canadian MPS Society is dedicated to supporting individuals and families affected with MPS and related diseases through such vital services as:

  • this website
  • our 1-800#: 1-800-667-1846.
  • our quarterly newsletter the Connection: a valuable resource that helps members stay on top of MPS-related news and events and stay in touch with each other.
  • our Family Referral Directory: connecting families affected with the same syndrome or living in the same region.
  • our Family Assistance Program: financial aid to affected families living in Canada.
  • advocacy support: to ensure our members receive the treatment and care they need.
  • biennial family conferences: providing families an opportunity to learn more about new research, treatments and care strategies, and to meet with other families, share experiences and form life-long friendships.
  • bereavement support, for families dealing with the devastating loss of a child to MPS or a related disorder.
Education:

The Society supports public awareness campaigns – like our Canadian MPS Jeans Days - develops, publishes, and distributes a variety of educational materials, issues press releases, and maintains this website and a facebook page with important updates on the Canadian MPS Society's news and events as well as links to our international sister organizations and other helpful resources. Our biennial conferences give affected individuals, their families, and medical professionals an opportunity to meet and share information with each other.

Fundraising and Research:

The Society's initiatives are funded primarily through private donations and fundraising. Events like our Canadian MPS Jeans Days and The MPS CUP enable us to fund annual Summer Studentship Research Grants as well as larger research grants at major university centres. Research into MPS and other lysosomal storage disorders has led to exciting new treatments: Your financial support is crucial in order for us to find cures for MPS and related diseases.

You can also support the Canadian Society for Mucopolysaccharide & Related Diseases by becoming a member, attending or organizing an event, sharing your story, volunteering, or simply by informing yourself and spreading the word to others about MPS and related diseases. The Canadian MPS Society has made great strides in providing support and services to its members and the community. Help us grow.

Living with a chronic, progressive illness can cause emotional and physical stress - the demands can be overwhelming. To find out how The Canadian MPS Society can help you deal with MPS or a related disorder in your family please call 1-800-667-1846.

Help us find a cure.

Currently there is no cure for MPS or related lysosomal storage disorders and until recently, treatment for MPS and related diseases has been primarily symptomatic, with bone marrow transplantation considered a successful, although high-risk, procedure in some cases; however, research in the past decade has led to exciting advancements in gene therapy as well as to the development of enzyme replacement therapies (ERTs). Continued research is necessary in order to find cures for all types of MPS and related diseases.

Registered Charity #12903 0409 RR0001

Annual Reports:

Click here to read our 2013-2014 Annual Report.
Click here to read our 2012-2013 Annual Report.
Click here to read our 2011-2012 Annual Report.
Click here to read our 2010-2011 Annual Report.
Click here to read our 2009-2010 Annual Report.
Click here to read our 2008-2009 Annual Report.
Click here to read our 2007-2008 Annual Report.
Click here to read our 2006-2007 Annual Report.
Click here to read our 2005-2006 Annual Report.
Click here to read our 2004-2005 Annual Report.

By-Laws:

Click Here to read our Society's by-laws.

Privacy Policy:

Click here to read our Society's privacy policy.

Gift Acceptance Policy:

Click here to read our Society's gift acceptance policy.