Karen Harrison | Support Services Manager
ALD Life

Karen Harrison, Support Services Manager, ALD Life

I am the Support Services Manager for the UK charity ALD Life, offering practical, emotional and financial support to patients and their families who are living with a diagnosis of adrenoleukodystrophy (ALD) and adrenomyeloneuropathy (AMN).
ALD is a rare X-linked hereditary condition which causes demyelination of the brain, which if not diagnosed and treated in a timely manner causes severe disability.
I am a carrier of ALD and have two severely affected sons. Both through my personal and professional experience I have a wealth of knowledge and understanding of what families go through when they are given a rare disease diagnosis.


Precision 2018 Day 2 @ 13:00

13:00 Networking Lunch

Break out panel: Patient involvement in precision medicine
  • What are the benefits of involving the public in precision medicine
  • The patient experience with precision medicine and patient involvement
  • How clinicians can improve the patient experience
  • What are the barriers to involvement and how can they be overcome

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