Josephine (MPS I)
Our daughter Josephine was diagnosed with MPS 1 Hurler Syndrome on her first birthday. After a stem cell transplant at 18 months, she has been doing relatively well. However, she recently became self-conscious about looking and moving differently. She stared to...
Stephanie and Elovic
When my son Elovic was diagnosed with MPS at age 3, I was in shock. It felt like my world was tearing at the seams. I was faced with so many unknowns and I wasn’t certain how to deal with everything that was being sent my way. That’s when I reached out to the Canadian...
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.
We Care October
An evening of candid conversation and camaraderie facilitated by the wonderful Angie Lombardo, an MPS I parent herself…
MPS Cup Anniversary Celebration
We want to extend our deepest gratitude to everyone who attended, volunteered and donated to the MPS Cup event supporting those affected by MPS. Your participation made our event a huge success. If you missed the event but would still like to contribute, donations can...
We Care – June
Join us at We Care – a Gathering for Parents and Caregivers. – A NEW DAYTIME SLOT. 10-11:30 AM PST. (1-1:30 PM EST)
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.
We Care – April
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 on March 15, facilitated by Angie...
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.