Wolfram Family Coordinator
Because Wolfram Syndrome is such a rare and complex disorder, it can be difficult for those with the syndrome or
undergoing diagnosis to access local information and advice. This can
leave them and their families feeling isolated and alone.
In partnership with Birmingham Children’s Hospital, WellChild’s Wolfram Syndrome Family Coordinator, Rachel Bates works with families with children and young people affected by the condition; to provide information, support and advice.
Listening to families is at the heart of what we do at WellChild, and an important part of the Family Coordinator role is to connect with families and feedback their experience and opinions to the team who run the Wolfram Syndrome clinics at Birmingham Children’s Hospital. Through the Family Coordinator, families are able to influence how the service is delivered.