Clinical Trial RGX-111 for MPS I Halted

Clinical Trial RGX-111 for MPS I Halted

November 8, 2023 Dear MPS I community, This afternoon REGENXBIO Press Release 8Nov2023, we announced a corporate restructuring that impacts our development of potential AAV gene therapies for MPS I. We are disappointed to share that REGENXBIO will no longer be moving...
We Care – June

We Care – June

Join us at We Care – a Gathering for Parents and Caregivers. Following great feedback from the last We Care – a Gathering for Parents and Caregivers, online session for our members: the Canadian MPS Society are pleased to host another, facilitated by Angie...
May is the month for MPS awareness!

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 and adults caused by the absence of a specific enzyme. There are 7 types of MPS. It is estimated that 1 in every 25,000...
National Strategy for Drugs for Rare Diseases

National Strategy for Drugs for Rare Diseases

$1.5 Billion Canadian National Strategy for Drugs for Rare Diseases The Health Minister Jean-Yves Duclos announced measures in support of the first-ever National Strategy for Drugs for Rare Diseases, with an investment of up to $1.5 billion over three years. This will...
Post-Trial Access TAK-609

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. This program will provide continued access for patients who have benefited from treatment on existing studies....
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...