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
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.
A Guide to Help Siblings Cope
Courageous Parent Network has published a guide Communicating Effectively and Compassionately to Help Siblings Cope.
What’s Morquio? By Titus Aged 3
Titus and his family have made a series of videos to show what it’s like to grow up with Morquio (MPS IV).
“Our Voices” Podcast: Saving Ryan
Saving Ryan is the inspiring story by physician-scientist Dr. Emil Kakkis about his journey to develop a new, first-ever treatment for MPS.
New Born Screening #NBS4MPS
The Canadian MPS Society has been strongly advocating to add MPS I-H (Hurler Syndrome) to all newborn screening panels throughout Canada. To date,...
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