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.

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

2024 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:

  • 24th November 2023
  • 26th January 2024
  • 22nd March 2024
  • 24th May 2024
  • 28th June 2024
  • 27th September 2024
  • 22nd November 2024

Map of Heritage Building, QEH, Birmingham

Click image for full view

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

For more information, please contact Tracy Lynch or Phillippa Farrant, Adult Support Co-ordinator

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

  • 15th and 16th January 2024
  • 4th and 5th March 2024
  • 10th and 11th June 2024
  • 7th and 8th October 2024

Floorplan of Waterfall House, BCH

click image for full view of floor plan

If you would like to be referred for a clinic, or have a child you would like to attend, please contact Tracy or Georgina King, Family Support Co-ordinator
Places are by invitation only, so please DO NOT book or make any travel arrangements until you have heard from the hospital.

Birmingham Children’s Hospital fully launched their DrDoctor Notification system in January 2024. This is used to improve ways of communicating with patients, families and service users about your appointments, for example by sending letters digitally.

Some of our families are receiving email or text notifications that they are on a waiting list for a WS clinic, which is causing a bit of confusion. This isn’t a guarantee that you will be seen at the next upcoming clinic, but are on the list to be seen at some point.

If you have been told you are attending a clinic already, please ignore the reminders as they are auto generated.

To see what a children’s clinic is like, click on the button below for an example view.

Home Monitoring Equipment – New 3rd March 2021

Here is the link to the webinar explaining why some people are being sent some of this equipment as well as how to use it.

Slides used are being included as well for use separately in the future if required.