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.
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:
- 27th March – CANCELLED
- 22nd May
- 17th July
- 25th September
- 27th November
Trial recruitment is being done separately to clinics .
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:
- 1st & 2nd June
- 5th & 6th 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.
