You’re Invited to “WE CARE”
Join us on Wednesday, 25 January, 2023. A Gathering for MPS Parents and Caregivers
November Fireside Chat
The Canadian MPS Society will be hosting a series of online “Fireside Chats”, providing an opportunity for our members to connect with each other in an informal confidential space to share personal stories, and insights, and exchange strategies and resources. These...
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 – both their own and that of others. Grief can be experienced not only after someone’s passing but also can be...
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 Raza Amin and the MPS Society. Tough Mudder is a team building endurance event series in which participants attempt...
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 social worker, writer, trainer, and sibling. Over the past 16 years, she has provided workshops, training, and groups for...
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 reviewing the prices of patented medicines during the period between the coming into force of the recently amended...
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 diseases in order to facilitate the work of anaesthesiologists and to improve patients’ safety. This a project of the...
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 screening panel (RUSP) for newborns. This enables several states to begin testing newborns immediately. Early diagnosis...
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 happy to share that Ultragenyx will be taking over the clinical trials for AAV gene therapy ABO-102 (now UX111). “Based...