ALD Life

ALD Life is a patient support group and registered charity for patients and families with Adrenoleukodystrophy (ALD) and Adrenomyeloneuropathy (AMN). What we do? • Provide practical support, advice and information to patients and families with Adrenoleukodystrophy (ALD) and Adrenomyeloneuropathy (AMN) • Raise awareness and improve public education into both conditions • Advance medical research looking into finding better treatment For example, last year we: • brought together more than 30 families to share experiences and make new friends with families going through similar circumstances • provided financial support to more than 10 families to help get specialist equipment, full-time care and regular treatment, including a Bone Marrow Transplant (BMT) • started a Patient Liaison Service to provide full-time support to families, over the telephone, by email, and in person • campaigned to make sure endocrinologists in the UK start to test young boys with primary idiopathic adrenal insufficiency for the ALD gene