Inform Rare has launched a new resource – CommuniKIDS – a template to help researchers convey clinical trial results back to participating youth and their families in plain easy to understand language. CommuniKIDS, funded in 2021 by CHILD-BRIGHT, takes its...
Start the New Year off making friends and allies – a reminder that registration is open for the first We Care Session for 2024. Receiving a rare disease diagnosis such as MPS brings immense change and challenges. Alongside the medical complexities, families must...
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 enzyme replacement therapy designed to address the behavioral, cognitive, and physical symptoms in Sanfilippo syndrome...
We are relatively new to MPS, we only found out in April 2023. Shortly after I was speaking to the doctor that diagnosed Joseph, my son, the doctor had mentioned the MPS society of Canada. Needless to say I reached out not wasting anytime. My wife encouraged me to do...
My name is Édith and my son, Felix-Antoine, has Hunter Syndrome (MPS II). Since many years now, the Canadian MPS Society has helped me connect with other families who has been living the same reality. For example, we attended the Family Conference in Montreal in 2017,...
