Other useful organisations

There are many other organisations out there that may be able to provide information and support. Details of some of these are listed below.

Fighting Blindness

An Irish patient-led organisation funding and enabling world-leading research into treatments and cures for blindness. It also provides a professional counselling service for people and families affected by sight loss, and is extremely active in the area of patient advocacy and empowerment. Fighting Blindness is involved with rare, genetic, age-related, and degenerative conditions that cause sight loss, including Leber Hereditary Optic Neuropathy (LHON).

Visit www.FightingBlindness.ie for more information.

Visibility Scotland

Visibility Scotland provides support to children and adults who are blind or partially sighted and live in Scotland. They also support families and carers of anyone affected by sight loss.

Visit visibilityscotland.org.uk/ for more information.


The Royal National Institute of Blind People (RNIB) is one of the UK’s leading sight loss charities and the largest community of blind and partially sighted people. They can offer help and support for blind and partially sighted people, including practical and emotional support, campaigning for change, reading services and the products we offer in our online shop.

Visit www.rnib.org.uk/ for more information.


VICTA is a national charity that provides support to children and young adults from 0 to 29 years old who are blind or partially sighted, as well as their families.

Visit www.victa.org.uk/ for more information.

International LHON communities

There are other LHON organisations around the world, for example in: