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, what the testing process might involve, and connect you with the services that can help.

Some people with an inherited condition 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’s happening in the area of research.

Please note that we cannot offer a diagnosis, answers to medical questions or genetic testing referrals, but we can put you in touch with the people who can, and make sure you have the right help and support along the way.

For many people, the impact of a diagnosis can raise difficult emotions and it might be helpful to arrange 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. Please call the Advice and Information Service on 0300 3030 111, or use our online referral form.