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
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.
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.
A Guided Pathway to the Clinical Trials Process
Courageous Parents Network has a Guided Pathway designed to present families with a clear-eyed picture of the clinical trials process, through the...
What’s On Your Summer Reading List?
A list of books for children to teach them how everyone is unique how to turn feelings of sadness, anger and fear into happiness and how to find kindness and positives in each day.
Rare Revolution’s Magazine on Long-Term Caregiving
Rare Revolution’s online magazine. This edition recognises the unrelenting mental and physical strains of caregiving.
Mental Health Education Webinar Series
The Rare Disease Foundation has published five helpful videos on their YouTube channel from their recent Mental Health Webinar.