Coming to terms with and managing a genetic condition is likely to have an emotional impact. Many people will need emotional support or professional psychological counselling at some stage. It is always important to discuss any emotional difficulties with your GP as they will be aware of local services. In addition to NHS services there are organisations that can either advise about or directly provide emotional support.

British Association for Counselling & Psychotherapy (BACP)

This is the professional body for counsellors and psychotherapists in the UK. The Association sets, promotes and maintains standards for the counselling profession. When choosing a counsellor it is best for the person you work with to be a member of the BACP Register This gives you an assurance that they meet the standards of proficiency and ethical practice you would expect.

01455 883300

It’s Good to Talk

Find a qualified counsellor or psychotherapist close to you.


SANE runs a national, out-of-hours mental health helpline offering specialist emotional support and information to anyone affected by mental illness, including family, friends and carers. We are open every day of the year from 6pm to 11pm.

0300 304 7000

Get Connected

Get Connected is the UK’s free, confidential and multi-issue helpline service for young people under 25 who need help, but don’t know where to turn. We help young people find a path to a brighter future.

0808 808 4994


Samaritan trained volunteers are able to listen to you any time of the day or night. They can help you talk through whatever is troubling you, find the answers that are right for you and offer support.


Changing Faces

Changing Faces supports people who have any condition that affects their appearance, anywhere in the UK. They can provide confidential emotional support, advice and information.

0300 012 0275

RNIB Sight Loss Counselling

The RNIB have a team of trained counsellors who can support people who are finding it hard to come to terms with feelings about sight loss.

0303 123 9999

Macular Society Counselling Service

The Macular Society have a specialist team of qualified counsellors who provide a telephone counselling service for people experiencing central vision loss.

0300 3030 111