Time for Change

This 22-page report was commissioned in response to the UK National Screening Committee consultation on genetic screening for GH in adults. It was published in February 2021.

It sets our the evidence supporting our call for the government to introduce genetic screening in the UK for people affected by genetic haemochromatosis.

We believe that :

  • there is substantial evidence that GH is more prevalent in the UK population than previously thought
  • there is significant medical evidence that GH can lead to excess levels of ill-health and disease in people affected
  • there is substantial lived experience of people with GH demonstrating the often avoidable pain, disease and ill-health from a delayed or late diagnosis of GH

This report sets out our case. It is commended to supporters, policy-makers, clinicians, elected representatives and people with GH as a call to arms - it's Time For Change.

(This report is available for dispatch from 15th February 2021.)