Genetic support service

If you have an inherited macular condition, or your child has recently been diagnosed, you may be confused and worried about what this means for your family. We provide a telephone and email service to help people with inherited macular conditions, parents and other family members understand the nature of genetic macular dystrophies and their impact.

The genetic information and support service offers information and advice on a number of issues, including:

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

Callers can discuss practical and emotional concerns, which may include explaining the condition to a new partner or managing the feelings of guilt many people feel.

The service can also be accessed by anyone considering genetic testing for macular conditions or anyone with questions about research.

Callers are referred to the service by Macular Society helpline staff. The number of sessions required will depend on the individual and the situation.

Our genetics expert is non-judgemental and does not make decisions for people. The service cannot offer a diagnosis, answers to medical questions, genetic testing referrals or psychological therapy.

It is not a replacement for full assessment and evaluation by a clinical genetic team, but will endeavour to provide as much information, support and guidance as possible.

To find out more, call the Advice and Information Service on 0300 3030 111