https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/inherited-white-matter-disorders-iwmd/
Inherited White Matter Disorders (IWMD)
Inherited White Matter Disorders (IWMD), also known as leukodystrophies, are rare genetic disorders that primarily affect the white matter of the nervous system (the brain, spinal cord and peripheral nerves).
Many, but not all, IWMDs are progressive diseases where there is increasing neurological impairment affecting mobility, speech, feeding, vision, hearing and cognitive skills.
There are many different IWMDs and how someone is affected depends on the cause of the white matter disorder. IWMDs affect males and females of all ages and ethnic backgrounds.
Find out more about IWMD on the 'We are Alex, The Leukodystrophy Charity' website.
About the IWMD service
Great Ormond Street Hospital (GOSH) and Evelina London Children’s Hospital (ELCH) at Guy's and St Thomas' (GSTT) have been jointly designated to host the paediatric IWMD centre for the South of England.
Dr Rahul Singh and Dr Cheryl Hemingway are the joint leads for this service. This service will model on the multidisciplinary care provided by metabolic consultants, neuro-radiologists, geneticists, neuropsychologist, genetic scientists, specialist nurses and a service coordinator.
Referrals
You will get an appointment to one of the two centres - Great Ormond Street Hospital (GOSH) or Evelina London Children’s Hospital (ELCH).
Clinical staff can make a referral using the following email address - gst-tr.gosh-iwmdr@nhs.net
Patients cannot self-refer and referral will only be accepted from a recognised member of clinical staff.
Appointments
Appointments will be on the first Thursday of the month. Alternating between ELCH and GOSH.
Face to face sessions will last approximately 60 mins and will usually be attended by the lead clinician and other members to the clinical team.
Virtual clinic sessions will last approximately 30 minutes and will usually be with the lead clinician.
You will be informed whether the appointment will be face to face or virtual.
Follow ups will be booked by the paediatric neurology team once they have received an outcome. They will then be booked into a follow up clinic at one of the two sites.
Please bring all medical information, any medication you are on and the names of their main care team.
Changing or cancelling appointments
You can change or cancel appointments by contacting the Paediatrics Neurology team to reschedule.
Great Ormond Street Hospital (GOSH)
Email - gos-tr.neuro-referrals@nhs.net
Telephone - 020 7405 9200 extension 0511 (Service Coordinator to IWMD)
Evelina London Children’s Hospital at Guy's and St Thomas' (GSTT)
Email - PaediatricAppointmentsNeurology@gstt.nhs.uk
Telephone - 020 7188 7188 Ext: 84000
Transition to adult services
For transition of patients to the adult IWMD service we will be working with the IWMD service team based at The National Hospital for Neurology and Neurosurgery, Queen Square.
We are currently in the process of national mobilisation and our clinical service have started. The new service will build on the previous regional services that have been available for patients with confirmed or suspected IWMDs.