About Ald Life
About This Shop
ALD Life is a patient support group for patients and families affected by Adrenoleukodystrophy (ALD) – a rare genetic disorder that affects mainly young boys between the ages of 4 to 10.
We provide emotional and financial support to patients and families including a grants programme that helps families cover vital support costs. We provide practical information and advice to patients and families to help them make informed decisions about their health and social care needs. We also help fund medical research projects looking into finding better treatment.
Our activities include:
a Get Together Family Weekend that gives families an opportunity to meet others going through the same situation
a Patient Liaison Service that supports families over the telephone, by email or in person about potential health and social care options for patients
a Grants Programme that gives financial aid to families struggling to cope with costs of getting access to equipment, care, therapy or treatment.
raising awareness and improving public education of ALD and related conditions
producing health and social care literature on ALD and related conditions
funding medical research looking into finding better treatment
As a small independent charity, our ethos is entirely based on being as self-sustaining as possible. That’s we’ve opened a series of charity shops in South London. At present, our charity shop business covers our admin and running costs, allowing the charity to put all funds raised from fundraising activities straight to supporting its charitable activities.