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.
Courageous Parent Network has published a guide Communicating Effectively and Compassionately to Help Siblings Cope.
CommuniKIDS – a toolkit to help researchers convey clinical trial results back to participating youth and their families in plain easy to understand language.
Titus and his family have made a series of videos to show what it’s like to grow up with Morquio (MPS IV).
Saving Ryan is the inspiring story by physician-scientist Dr. Emil Kakkis about his journey to develop a new, first-ever treatment for MPS.
The Canadian MPS Society has been strongly advocating to add MPS I-H (Hurler Syndrome) to all newborn screening panels throughout Canada. To date,...
Ultragenyx has relaunched their patient support interactive website, UltraRareAdvocacy.com with a refreshed design and more ways to connect with...
(MPS I) Raymond Wang, MD, Metabolic Specialist and Director of the Multidisciplinary Lysosomal Storage Disorder Program at Children’s Hospital of...
A coalition of patient advocacy organizations has published a Global Roadmap for Sanfilippo Syndrome Therapies, in an effort to accelerate research...
Courageous Parents Network is a non-profit organization and educational platform that orients, empowers and accompanies families and providers...