What We Do
When families learn that their child has been diagnosed with MPS, a rare, progressive and incurable disease that may potentially take their child’s life, it places on them a heavy emotional, physical and financial burden that few can relate to or understand. Most newly diagnosed families have never even heard of the disease and struggle to find adequate information or resources to guide them through the process of seeking treatment.
The Canadian MPS Society helps ease the burden by providing the following services:
MPS Community Connection
Networking opportunites through our Family Referral Directory (Affected Family Members only) and invites to our biennial National Family Conference bringing together families, youth and siblings, to learn about advances in care and treatment while developing life-long friendships.
Financial Assistance Program
Financial support to help families manage the extraneous costs associated with MPS and related diseases, such as travel to treatment facilities, medical aides and wheelchair accessible home remodelling. We make sure families know that we’re there for them through grants that help them focus on their children rather than on financial hardships.
Our monthly digital newsletter, the e-Connection, includes stories from our members and partners, research and treatment updates, and information about upcoming events.
Our staff are available to support families in accessing appropriate care and treatment in new diagnosis and beyond. We also facilitate connecting to other members for mutual support, and during times of loss and bereavement.
Available in English and French.