EVERYBODY GRIEVES: Webinar Recording

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...
Run for Raza

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?

Why is it imperative to recognise MPS early?

CTV Kitchener. has featured a story on one of our children, Joseph Saliba, who lives with Sanfilippo Syndrome to raise awareness of MPS. There is no cure for this type of MPS but there is a trial underway for gene therapy, that could help prolong life. The trial,...
The Rare Sibling Experience: Sibshops Support

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

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...