NHS Wolfram Syndrome Multi-Disciplinary Clinics
A multidisciplinary clinic has been set up at Birmingham Children's Hospital to provide reviews for children and young people 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.
They can also access support, advice and information via the Wolfram Syndrome Family Coordinator, whose role it is to help families attend the clinic and support them on the day.
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
2018 Clinic Dates
Children’s Clinics (TBC) – these may have a change of venue at some point during 2018 to the newly built Rare Disease Centre behind Birmingham Children’s Hospital
- 19th & 20th February
- 30th April & 1st May
- 16th & 17th July
- 1st & 2nd October Adult clinics – these are held in the Centre for Rare Diseases. This is situated within the Heritage Building on the Queen Elizabeth Medical Campus in Edgbaston, Birmingham
- 19th January
- 16th March
- 25th May
- 27th July
- 28th September
- 23rd November
If you would like your child/young person to be seen at the Children’s WS clinic please contact either
Jody Blake- firstname.lastname@example.org
Tracy Lynch - email@example.com
If you are an adult that would like to be seen at the Adult WS clinic please contact
Debbie Gittens - Debbie.Gittens2@uhb.nhs.uk