ALD Life

Patient support group providing advice and information about Adrenoleukodystrophy for sufferers, families and carers

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Full summary:

ALD Life is a patient support group for families affected by adrenoleudodystrophy (ALD) adrenomyeloneuropathy (AMN) which are rare, inherited and incurable metabolic conditions caused by a faulty gene.  ALD affects mainly boys aged 4 – 10 and is life limiting brain disorder and AMN affects the spinal cord in adults leading to disability, coordination and incontinence problems.

Services provided:

They provide practical support, advice & information to patients and families with ALD and AMN via their helpline, in person, online and via ALD / AMN leaflets. Families, patients and carers can also attend their annual ALD Life Community Weekend where they can meet other patients, families, consultants and researchers and find out about the latest information about these conditions (free places are available for patients and selected family members and carers). They also raise awareness, improve public education, help to advance medical research looking into finding better treatment  and campaign for new born screening.

Address

45 Peckham High Street
London
SE15 5EB

Phone: 020 7701 2628
Website: http://www.aldlife.org
Email: info@aldlife.org
Helpline number: 020 7701 4388 (Advice Line)

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