We are part of a working group developing national UK information resources endorsed by the British Society for Paediatric Endocrinology and Diabetes (BSPED) for children, young people and parents about the sick day management of adrenal insufficiency (AI).
They would like to get some parents of UK children and young people with adrenoleukodystrophy (ALD) to be part of this Patient and Public Involvement and Engagement (PPIE) group to co-develop resources for sick day management of AI. Meetings can be held via email and some via phone calls/teams etc.
They are very interested in having ALD representation. Please email brayl@Edgehill.ac.uk and they will be in touch.
