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To bring together families and individuals living with rare, inherited and incurable metabolic disorders caused by a faulty ABCD1 gene called adrenoleukodystrophy (ALD) & adrenomyeloneuropathy (AMN). The event will support those affected and inform them of developments in treatment and research.
Categories
Beneficiaries
Situation
ALD & AMN are rare disorders (approx. 1:20,000) so families are isolated and geographically dispersed. There are also few specialists treating or researching this condition. Medical information and emotional support is needed after diagnosis and throughout the ALD/AMN journey as both the immediate and wider family can be affected. Crucially many people rarely get any respite from the rigours of living with disabilities caused by ALD/AMN due to unsuitable locations and prohibitive holiday costs.
Solution
Provide respite from the hardship of living with a horrendous disorder. Reduce isolation by providing opportunities for families to network, make lasting friendships, support each other and receive advice. Workshops/activities will cover coping strategies