Specialist NHS Clinics
A multidisciplinary clinic at Waterfall House, the Rare Disease Centre at Birmingham Children’s Hospital, sees 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 and their 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 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
Children and young people 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
Whilst at the clinic children, young people and their families meet with a variety of experts including:
- Endocrinologist (specialises in diabetes)
- Neurologist (specialises in brain and nervous system disorders)
- 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)
Through the Wolfram Syndrome Family Coordinator, families are able to influence how the Wolfram Clinics are delivered. For further information about this clinic, please call the Wolfram Syndrome Family Coordinator on 01242 548762 or email firstname.lastname@example.org
How to get a referral
Your child’s GP or Paediatrician can arrange a referral to the specialist clinic.
A multidisciplinary clinic at the Rare Disease Centre at the Queen Elizabeth Hospital in Birmingham sees adults with a confirmed diagnosis of Wolfram Syndrome. For further information about this clinic, call 0121 371 6879.
Upcoming Clinic Dates
Children’s Wolfram Syndrome Clinics (2019)
Waterfall House, the Rare Disease Centre Birmingham Children’s Hospital
2nd & 3rd March 2020
1st & 2nd June 2020
5th & 6th October 2020
Adult’s Wolfram Syndrome Clinics (2018-19)
Heritage Building on the Queen Elizabeth site
27th March 2020
22nd May 2020
17th July 2020
25th September 2020
27th November 2020
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.