Genetic testing information

If you have an inherited macular condition, or your child has been diagnosed, you may be confused and worried about what this means for your family.

We can help you understand the nature of genetic macular dystrophies and what the testing process might involve.

You might find it helpful to understand more about:

  • how macular conditions can be passed on in families
  • the chance of other family members being affected
  • what genetic testing is available
  • how to get a referral to see a genetic specialist
  • what to expect at a genetic eye clinic appointment
  • what research is happening into inherited conditions.

Although we cannot offer a diagnosis, answers to medical questions or genetic testing referrals, we can put you in touch with the people who can.

And in the meantime, we’ll make sure you have the right help and support along the way.

Emotional support

For many people, a diagnosis like this can raise difficult emotions and it might be helpful to speak to our specialist counselling service.

Our professional counsellors are BACP registered and have years of experience of working with people with sight loss.

For more information, please call the Advice and Information Service on 0300 3030 111.