Useful Links
Part of the Society’s mandate is to offer support and information to families affected by MPS and to encourage public awareness of MPS diseases. To this end, we’ve provided this list of links to potentially helpful websites.
Resources
EVERYBODY GRIEVES: Webinar Recording
Grief is considered a "taboo" topic and should be avoided in conversation. As a result, even fewer people know how to respond to and process grief –...
The Rare Sibling Experience: Sibshops Support
Listen to a talk about the sibling perspective and the support available with Emily Holl, the Director of the Sibling Support Project. Emily is a...
Anaesthesia Recommendations For Rare Diseases
Want to find out more about anaesthesia and how it relates to rare diseases? OrphanAnesthesia publishes anaesthesia recommendations for rare...
Gene Therapy For Inherited Metabolic Diseases Explained
Ever wondered… How does gene therapy work?Why does it work better for some conditions that others?What is the difference between in vivo and ex vivo...
Video: Mucopolysaccharidoses and Mucolipidoses Explained
Dr. Matthew Ellinwood provides an overview of the mucopolysaccharidoses (MPSs) and mucolipidoses (MLs).
Podcast: How To Manage the Responsibilities of Being a Caregiver and Avoid Burnout
In this podcast by Beyond My Battle, learn how any caregiver can address feelings of helplessness, how to support a loved one effectively, and the importance of practicing self-care to avoid burnout.
Educational Videos
A collection of educational videos to help understand what MPS is, the MPS journey and how the Canadian MPS Society can support MPS affected families in that journey.
The Importance of Early Diagnosis
Parent Vlogs: Our MPS I Diagnostic Journey
Matteo’s Story: The Importance of Newborn Screening
Why Fundraising Is Important To Advancing Treatment