Our Director of Support, Karen, and Research Analyst, Kristina, attended the BPNA (British Paediatric Neurology Association) annual conference from Wednesday 28th – Friday 30th January in Glasgow.
The event was attended by paediatric neurologists from around the UK. By having a conference stand at the event it provides an opportunity to raise awareness of leukodystrophy and both the support and information we offer to individuals and families affected by the condition.
Presenting our poster
Alongside Dr Lydia Green (Paediatric Neurologist) from the Leeds NHS England paediatric IWMD service we presented a poster. Our poster was titled ‘Partnering for Impact: Reflections on the Collaboration Between Alex TLC and the NHS England Inherited White Matter Disorders (IWMD) Service’ highlighting the experiences of those using one of the three IWMD paediatric centres in England.
Presenting as part of a special interest group
Karen, our Director of Support, and Dr Lydia Green, Paediatric Neurologist from Leeds NHS England paediatric IWMD service, presented at the BPNA annual conference 2026. They presented as part of a special interest group meeting discussing the NHS England IWMD Service and Registry. Lydia provided an update about the service and results from a recent family IWMD clinic experience survey. Karen talked about the families we support within Alex TLC. The group also included virtual presentations from Dr Rahul Singh about the IWMD registry and Dr James Poulter who discussed genetic testing.
