The Canadian Society for Mucopolysaccharide & Related Diseases Inc. (The Canadian MPS Society), was founded in 1984 by a mom whose child had been diagnosed with this incurable disease.  After trying to seek out information, which she could not find, she decided to form this group and start collecting helpful information for families who have been diagnosed.  MPS is a fatal disease in many cases.  This is a Rare Condition and it comes in various sub-types.  Some have a treatment that helps with pain using enzyme replacement, and some do not.  

40+ years later, the program has evolved and we are now trying to create kits for families when they have to be in hospital for treatments, operations, just general hospitalizations (there are many).  

Our families currently have access to the organization as a free membership and are invited to join our virtual groups, in person events for families, be updated about all of the newest information around their illness, given personal support and direction, apply for emergency funding resources and have a sense of not being alone.