We provide genetic counselling appointments for Haemochromatosis UK members*.

This follows our 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.

Haemochromatosis UK provide the genetic counselling service in-house through our Registered Genetic Counsellor, Helen Bethell (GCRB number 354). When you receive an appointment, Helen will contact you by video call or telephone to discuss your situation and any concerns you may have.

Helen has explained what happens during a genetic counselling session in her video here. The Genetic Counsellor Registration Board have also published useful free leaflets explaining what's involved.

How to request a genetic counselling appointment

To request a genetic counselling appointment, complete this simple referral form (members only). The form takes 1-2 minutes to complete. The information you provide will help us to allocate an appointment for you using either video conference or telephone. 

Ask for a genetic counselling appointment (members only)

The genetic counselling service is free for all Haemochromatosis UK members; it is just one of the benefits of membership. If you are not already a member of our charity, you can join here.

Terms & Conditions (*)

As a small charity, we are limited in the number of appointments available. Consequently, all appointments are made subject to the following terms and conditions :

  • Appointments are provided on a first-come/first-serve basis for members of Haemochromatosis UK, who have been a member for at least 1 month. 
  • If you are already a member of Haemochromatosis UK, we will be in touch within 2-3 working days to confirm appointment availability.
  • Appointments are offered on Tuesday mornings between 9.30am and 12.30pm. Each appointment lasts up to 30 minutes.
  • If you are allocated an appointment please make every effort to attend promptly. If for any reason you no longer require the appointment, please let us know at [email protected] as soon as practical, so we can allocate the appointment slot to someone else who needs it.
  • Members may request one appointment per calendar year; for more complex or long-running matters, Haemochromatosis UK may - in its sole discretion - offer additional counselling appointments up to 3 per calendar year.