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.

Are you looking for more information?

Call the Macular Society Helpline on 0300 3030 111 or email help@macularsociety.org

Last review date: 02 2022

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Our counselling service

Struggling to cope with macular disease or sight loss? Get free, confidential counselling from trained professionals. Emotional support for individuals and carers.

Friendly support

Other support services

We provide free information and support to those with macular disease, along with their family and friends, to help people keep their independence.

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Free confidential advice and support

Call our helpline on 0300 3030 111

Lines are open 9am - 5pm Monday to Friday

About the Macular Society Helpline