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.
Below is some of the feedback we’ve had: –
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:
Map of Heritage Building, QEH, Birmingham
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.
The dates for the Children’s Clinics run from Waterfall House, the Rare Disease Centre at Birmingham Children’s Hospital are:
Floorplan of Waterfall House, BCH
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.
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.