by adminmps | Mar 6, 2024 | Past Event
Spring Is Here! Let’s Spread Seeds of Hope! Join us this March for our monthly We Care virtual gathering celebrating the incredible strength of our MPS community. We’ll kick things off by sharing humble brags about our brave MPS warriors and their triumphs, no...
by adminmps | Jan 25, 2024 | Past Event
Join us for a Men’s only session of ‘We Care’, Balancing work, being a Dad, Step Dad, Husband, Partner, coach can be hard enough- add in the complexities of MPS….we can feel like we are doing this alone, like we are on an island, but we...
by adminmps | Jan 22, 2024 | News, Resources
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...
by adminmps | Jan 10, 2024 | Past Event
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...
by adminmps | Dec 13, 2023 | Clinical Trials, News, Research
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...
