Clinic Dates & Information
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Clinic Dates & Information

NHS Wolfram Syndrome Multi-Disciplinary Clinics

Waterfall House – Children’s WS Clinic

Heritage Building – Adult’s WS Clinic

Multidisciplinary clinics have been set up at Waterfall House at Birmingham Children’s Hospital to provide reviews for children and young people and at The Rare Disease Centre at Queen Elizabeth Hospital, Birmingham for adults 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.

At the children’s clinic there is the Wolfram Syndrome Family Coordinator, whose role is to help families attend the clinic and support them over the 2 days. Support is currently limited for the adult clinics.

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:

  • 19th July
  • 27th September
  • 29th November

Trial recruitment dates are to follow. 

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

For more information please contact Tracy Lynch

The dates for the Children’s Clinics run from Waterfall House, the Rare Disease Centre at Birmingham Children’s Hospital are:

  • 3rd & 4th June
  • 15th & 16th July – TBC
  • 7th & 8th October

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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