Wolfram Syndrome Support

WellChild provide support to families of children or young people with Wolfram Syndrome. We provide access to support, advice and information.

Because Wolfram Syndrome is such a rare and complex disorder, it can be difficult for those with the condition 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, works with families with children and young people affected by the condition; to provide information, support and advice.

Click here to see the latest Wolfram Syndrome news

About Wolfram Syndrome

Wolfram Syndrome Annual Conference

Every year WellChild and Wolfram Syndrome UK hold a conference for children and young people with Wolfram Syndrome and families. These include talks, presentations and activities. Through the Wolfram Syndrome Family Coordinator, families are able to influence how the Wolfram Clinics are delivered and help tailor what is offered to help them.

Download a booking form for the 2017 Wolfram Conference, held on Saturday 7th October at Whittlebury Hall Hotel and Spa.

Read about the 2016 Wolfram Syndrome Conference

For Professionals

Below is some information for medical professionals, teachers or anyone working with children and young people with Wolfram Syndrome.

 

How to make a referral to an NHS Wolfram Clinic

For the Children’s Wolfram Syndrome Clinic, fax, email (using a secure network) or post the referral to the clinic administrator:

Wolfram Syndrome Clinic
Diabetes Home Care
Birmingham Children’s Hospital
Steelhouse Lane
Birmingham
B4 6NH

lindsay.wilson@bch.nhs.uk
Fax: 0121 333 9272

For the Adult clinic, fax, email (using a secure network) or post the referral to:

Wolfram Syndrome Clinic
Queen Elizabeth Hospital
Mindelsohn Way
Birmingham
B15 2TH

mandy.purslow@uhb.nhs.uk
Fax: 0121 371 6997

Find out more about NHS Wolfram Syndrome Clinics

How to support a child with Wolfram Syndrome at school

This guidance suggests ways in which you can support a pupil with Wolfram Syndrome.

Need help encouraging a student with Wolfram Syndrome to take part in PE?

Sainsbury’s Inclusive PE training provides free training workshops and resources for teachers, trainee teachers and school staff.

Advice and Guidance for local medical teams

The Wolfram Syndrome Specialist Clinic is made up of experts in the following areas:

Neurology
Endocrinology
Genetics
Audiology
Ophthalmology
Urology
Psychologist
Transitions Officer
Diabetes Nurse

If you need advise on any of these specialities in relation to Wolfram Syndrome, please contact the Clinic Administrator on 0121 333 9267

Information can also be found in the Clinical Guideline for the Management on Wolfram Syndrome.