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