Our charity conducted a research study in the Autumn of 2019, which showed that many people affected by genetic haemochromatosis have difficulty in accessing specialist genetic counselling services through the NHS. Yet, those people who have received genetic counselling found it helpful to understand their condition and also any potential risk or concerns for immediate family members.

What does genetic counselling involve?

Genetic counselling is where health professionals help people to understand the medical, psychological and family implications of a genetic condition. Although genetic haemochromatosis is the UK's most common genetic condition, it is often under-diagnosed. Because it is a genetic condition, haemochromatosis can be inherited. So, other family members may also be affected when someone else in the family is diagnosed.

There's an explanation of what happens during a genetic counselling session in the video here. The Genetic Counsellor Registration Board have also published useful free leaflets explaining what's involved.