We know how isolating it can be when living with, or caring for someone with an Inherited Metabolic Disorder, especially as in many cases there aren’t many people out there living with the condition. Families often find it comforting and helpful to talk to someone with the same, or similar condition – someone who has experienced the same things that they are facing. The Family Contacts Network is a free service offered by Metabolic Support UK, and to date over 700 families have joined.
The network enables families to discuss the day-to-day challenges of living with an Inherited Metabolic Disorder, to share experiences and knowledge, offer advice to each other on any number of topics including working with teachers to support their child at school, recipes, and be a listening and understanding ear. Families can let us know their reasons for looking for a contact and we will do our best to connect them with another family in a position to support them. The service is flexible and families are welcome to opt out at any point, although many great and lasting friendships have been forged.