by adminmps | May 24, 2024 | Uncategorized
Loic passed away in February 2024. He was a courageous and determined being and touched the lives of many. Here is is letter to you all recounting his journey in his own words. The original French version is posted below the English translation. “Good evening to...
by adminmps | May 1, 2024 | Uncategorized
C’est difficile pour moi de dire précisément ce que le mot “Maman” veut dire dans de telles circonstances. Quand Elovic était jeune, il disait maman à toutes les femmes qu’il croisait en leur prenant leur main. Si bien que les femmes riait en lui disant, “Je ne...
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...
