What we do
What do we do?
• Provide practical support, advice and information to patients and families with Adrenoleukodystrophy (ALD) and Adrenomyeloneuropathy (AMN)
• Raise awareness and improve public and professional education into these conditions
• Advance medical research looking into finding better treatment
For example, since June 2017 we have:
• held our largest ever ALD Life Community Weekend, bringing together over 100 individuals and families affected by ALD and AMN to meet and share experiences with each other as well as hearing from medical professionals who are specialists in these conditions.
• provided financial support to help those with ALD and AMN to afford specialist equipment, treatment and full-time care
• continued to develop our Support Services to provide full-time support to families, over the telephone, by email, and in person
• campaigned to increase testing of young boys with primary idiopathic adrenal insufficiency for the ALD gene in the UK