Patient Liaison Service
Our Patient Liaison Service provides in-depth support, advice and information to patients and families with Adrenoleukodystrophy (ALD) and Adrenomyeloneuropathy (AMN). We understand patients and families require different levels of support, advice and information to help them deal with their or their son’s condition. .
Our Patient Liaison Officer will:
- Manage a helpline to act as a first point of contact for patients and families.
- Visit patients and families at home or in hospital to provide face-to-face support.
- Provide practical information to patients and families to help them make informed decisions.
- Keep patients and families up-to-date with latest developments in treatment and research and changes in government legislation.
- Act as an intermediary between patients and families and local health and social care services.
- Work collaboratively with health and social care professionals to make sure needs of patients and families are being met.
- Help fill the gaps left by health and social care services in treating patients and families
If you would like support, advice or information to help you deal with your condition, please do not hesitate to get in touch:
Tel: 020 7701 4388