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.
About Wolfram Syndrome
Wolfram Syndrome affects about 1 in 770,000 of the total UK population or 1 in 500,000 children.
Wolfram Syndrome Resources
Take a look at our useful resources to help those with Wolfram Syndrome and their families.
Specialist NHS Clinics
Find out more about the specialist NHS clinics for 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.
This year there are 2 virtual conferences in September. Saturday 18th September and Saturday 25th September. Both events are open to the Global WS community, doctors, researchers and others interested in Wolfram Syndrome or Rare Diseases.
If you would like to receive more information about this, please email firstname.lastname@example.org
Below is some information for medical professionals, teachers or anyone working with children and young people with Wolfram Syndrome.
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.
If anyone has any questions, please don’t hesitate to call WellChild’s Wolfram Syndrome Family Coordinator on 07796710848.
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
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
Fax: 0121 460 5300
The Wolfram Syndrome Specialist Clinic is made up of experts in the following areas:
If you need advise on any of these specialities in relation to Wolfram Syndrome, please contact the Clinic Administrator on 0121 333 9267