NHS Wolfram Syndrome Multi-Disciplinary Clinics

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

During the clinic they can access specialist advice for individual medical complications; educational support, emotional support and genetic testing.

They can also access support, advice and information via the Wolfram Syndrome Family Coordinator, whose role it is to help families attend the clinic and support them on the day.

Clinic feedback

Below is some of the feedback we've had: -

  • "It has all been excellent. A long day but well worth it for reassurance, information and opportunities to meet other families. Thank you very much!"
  • "Good to meet the other families... would be nice to keep in touch."
  • "Comforting to know that there is a team of experts available if you have any questions or if anything comes up."

Watch a parent talking about her experience of the Children's Clinic

2019 Clinic Dates

    Adult Wolfram clinics are run from the Centre for Rare Diseases in the Heritage Building at The Queen Elizabeth Hospital, Birmingham and are taking place on the following days:
  • 18th January
  • 29th March
  • 24th May
  • 19th July
  • 27th September
  • 29th November

  • All dates are currently provisional

    For more information please contact either
    Jody Blake- Andrea Mitchell
    Tracy Lynch -

    The dates for the Children's Clinics run from Waterfall House, the Rare Disease Centre at Birmingham Children's Hospital are:
  • 7th & 8th January
  • 4th & 5th March
  • 3rd &c 4th June
  • 15th & 16th July - TBC
  • 7th & 8th October

  • All dates are currently provisional

    If you would like to be referred for a clinic, or have a child you would like to attend, please contact Jody (Children's clinic/transition) or Tracy (both clinics)>.

    Places are by invitation only, so please DO NOT book or make any travel arrangements until you have heard from the hospital.

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