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.