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 SyndromeWolfram 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.
The next Wolfram Conference 2020 will be a virtual conference held on Saturday 26th September. Further details will follow. If you would like to receive more information about this, please email wolframfamilies@wellchild.org.uk
For Professionals
Below is some information for medical professionals, teachers or anyone working with children and young people with Wolfram Syndrome.
COVID-19: Information for parents and carers
These information leaflets been developed by the doctors at Birmingham Children’s Hospital and have been adapted specifically for Wolfram Syndrome from the original information sheets for COVID 19 developed by BBS UK.
Information leaflet 1 is for those at an increased risk group, and Information leaflet 2 is for those in the extremely vulnerable group.
If anyone has any questions, please don’t hesitate to call WellChild’s Wolfram Syndrome Family Coordinator on 07796710848.
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
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
Fax: 0121 460 5300
Find out more about NHS Wolfram Syndrome ClinicsHow 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.