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Keep up with what’s happening in the MPS community, industry and research.
News Feed
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.
SickKids I-InTERACT-North program
SickKids, Toronto has expanded their innovative mental health support program, specifically designed with MPS families in mind. They understand the...
2025 National Family Conference
The National Family Conference in July 2025 will coincide with the Society's 40 Anniversary Gala. This milestone celebration will be even more...
May is the month for MPS awareness!
Every year May 15 is observed internationally, to raise awareness against mucopolysaccharidoses (MPS). MPS are rare genetic disorders in children...
Using Easy To Understand Language In Clinical Trial Summaries For Participants
CommuniKIDS – a toolkit to help researchers convey clinical trial results back to participating youth and their families in plain easy to understand language.
Denali MPS IIIA Clinical Study
December 12, 2023 Dear Sanfilippo syndrome Type A Community, We are pleased to share that a Phase 1/2 clinical study of DNL126, an investigational...
Clinical Trial RGX-111 for MPS I Halted
We are disappointed to share that REGENXBIO will no longer be moving forward with the development of RGX-111 for the treatment of MPS I.
National Strategy for Drugs for Rare Diseases
Health Minister Jean-Yves Duclos announced measures for the first-ever National Strategy for Drugs for Rare Diseases, investing up to $1.5 billion over three years.
Post-Trial Access TAK-609
Takeda has announced a Post-Trial Access program for patients currently enrolled in extension trials for TAK-609, a treatment for MPS II Hunter syndrome.
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...