Did you know that The Canadian Dental Care Plan (CDCP) is now in operation which can make the cost of dental care more affordable for eligible Canadian residents.? The CDCP covers children under 18, and adults with a valid Disability Tax Credit certificate. Learn...
Time is precious for all of us, but especially for those living with Mucopolysaccharidosis (MPS). This year’s International MPS Day theme—”It’s About Time”—highlights the critical importance of early diagnosis, timely treatment, and ongoing...
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...
SickKids, Toronto has expanded their innovative mental health support program, specifically designed with MPS families in mind. They understand the unique challenges and strengths of families impacted by MPS, and are committed to providing compassionate, tailored...
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...
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...