Clinic Dates & Information

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

2021 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:

  • 28th May
  • 16th July
  • 24th September
  • 26th November

Trial recruitment is being done separately to clinics . 

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

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

  • 7th & 8th June
  • 4th & 5th October

If you would like to be referred for a clinic, or have a child you would like to attend, please contact  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.

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.