What we do?

ALD Life Fundraisers
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



Gain an experience as unique as you by volunteering ur time with ALD Life, explore ur creativity & meet new people…


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