Support events and clinics
"I wanted to pass on a massive thank you from us all for such a wonderful day on Tuesday. We all enjoyed the magic of being there and the boys have very treasured memories of a special day as we do too."
Many individuals and families suffer isolation when a rare condition like MPS, Fabry or a related lysosomal disease is diagnosed. Often, when you tell someone your child has a rare disease the normal response can be confusion or even embarrassment and the result can often be a feeling of isolation.
During our family events, lasting friendships are made, support is offered and families also meet members of the support team. Read more about our up and coming family events below.