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Keep up with what’s happening in the MPS community, industry and research.
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News from the MPS Community, industry and research.
To view posts by category, click on your chosen category which appears after the date in any of the posts.
We Care Session March
Join us at We Care – a Gathering for Parents and Caregivers. A wonderful opportunity to connect with others affected by MPS who understand what you’re going through and who can provide valuable support and friendship, in an informal and confidential space.
You’re Invited to “WE CARE”
Join us on Wednesday, 25 January, 2023. A Gathering for MPS Parents and Caregivers
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 –...
Run for Raza
On September 17, 2022, a group of my family and close friends were kind enough to come together to run the Tough Mudder Obstacle Race in memory of...
Why is it imperative to recognise MPS early?
Kim Angel, Executive Director, Canadian MPS Society explains why recognising MPS early can save a child’s life.
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...
Results Of the Consultation On the PMPRB Price Review
On June 30, 2022, The Patented Medicine Prices Review Board (PMPRB) issued a Notice and Comment on its proposed approach for...
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...
MPS II is added to New Born Screening in the USA
The Department of Health and Human Services (DHHS) in the United States has approved adding MPS II as a condition to the recommended uniform...
Ultragenyx Takes Over Gene Therapy For Sanfilippo Syndrome Type A (MPS IIIA)
In our March edition we reported that Abeona Therapeutics had decided to end enrollment for their clinical trial for MPS IIIA children. We are now...