What We Do
No matter where you live in Canada, 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.
We help all over Canada. We host a biennial conference for families that brings everyone across Canada together to learn and meet each other in person. Our reach is changing, we are exploring each province with Metabolic Clinics to ascertain the full number of people who have been diagnosed with a lysosomal disorder and attracting new people. Regional development is fast on our minds as we realize that the personal connection of knowing someone in your community can be reached out to for support.
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.
Monthly e-newsletter
Our monthly digital newsletter, the e-Connection, includes stories from our members and partners, research and treatment updates, and information about upcoming events.
Advocacy
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.
Educational Resources
Available in English and French.
Annual Reports
For financials please contact the office directly.
2024 Annual Report
Our 2024 Annual Report features highlights, financial reports, and shows how your donations go a long way in supporting MPS affected families and our mission. Click on the cover image to view the report.
Past Annual Reports