Specialist NHS Clinics

A multidisciplinary clinic has been set up at Birmingham Children’s Hospital to provide annual or biannual reviews for children and young people with a suspected or confirmed diagnosis of Wolfram Syndrome.

The purpose of the clinic is to improve the quality of care for children and young people with Wolfram Syndrome or related conditions and to ensure they reach adulthood in the best possible health. The clinic offers expert medical and emotional support for children affected by Wolfram Syndrome and their families. The clinic does not replace the care provided by your local hospital and community teams, however it does provide a clinical resource and expert advice for local healthcare teams who need information and guidance on treating Wolfram Syndrome and its complications.

Clinic tests and investigations

Your child will have various tests and investigations during the clinic including but not limited to:

  • A blood test
  • Height and weight measured
  • Urodynamics, which measures the rate of flow when passing urine
  • MRI: the scanner uses magnets and radio waves to take pictures of the brain
  • Hearing tests
  • Eye tests

Consultants

Whilst at the clinic you will meet with a variety of experts including:

  • Endocrinologist (specialises in diabetes)
  • Neurologist (specialises in brain and nervous system disorders)
  • Psychologist
  • Urologist (specialises in conditions affecting the urinary tract)
  • Ophthalmologist (a medical doctor, trained in the medical care of the eye)
  • Audiologist (hearing)
  • Geneticist (explains the way conditions are inherited)

How to get a referral

Your child’s GP or Paediatrician can arrange a referral to the specialist clinic.

Upcoming Clinic Dates

Children’s Wolfram Syndrome Clinics (2019)

Waterfall House, the Rare Disease Centre Birmingham Children’s Hospital

7th & 8th January 2019

4th & 5th March 2019

3rd & 4th June 2019

7th & 8th October 2019

Adult’s Wolfram Syndrome Clinics (2018-19)

Heritage Building on the Queen Elizabeth site

November 23rd 2018

January 18th 2019

March 29th 2019

May 24th 2019

July 19th 2019

September 27th 2019

November 29th 2019

Please note that these dates are provisional and are subject to change. Please do not make plans to come to a clinic unless a place has been offered to you via an invite letter from the clinic administrator or the Wolfram Syndrome Family Coordinator has been in contact with you about attending.

A parent talks about her experience of the Wolfram Children’s clinic