Join Angie Lombardo as we kick off 2025 with our first We Care online session of the year! Whether you’re a newly diagnosed family seeking guidance or a long-time member of our community with wisdom to share, your voice matters here. In these connections, we...
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...
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...
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...
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...
Caring for a child with a rare disease like MPS can feel isolating at times – but you don’t have to go it alone. We’re bringing together a compassionate group of parents and caregivers who have been there and can offer a listening ear, share advice,...
