LHON Society

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Welcome to the LHON Society

You are in the right place if you or someone close to you, is affected by Leber’s Hereditary Optic Neuropathy (LHON), or you are a medical professional interested in LHON.

The LHON Society was established to create a home for those in the British Isles affected by and with an interest in, LHON. Our aspiration is that through the LHON Society you have access to:


Join Us

By joining the LHON Society you can assist us in our work supporting those affected, raising awareness and helping researchers find effective treatments. As a member, your views and opinions can contribute towards improving the lives of the LHON community. As the membership grows, our credibility increases and this is important as we continue to represent our members interests in broader debates with government and health care providers.

When you become a member you will be kept regularly updated on our activities and ways you can help support our work. Membership is free and open to all but please note we are a UK based charity.



Videos of the 2019 LHON society conference - click here to view

LHON and COVID-19 - Expert Updates

Dr. Valerio Carelli, Dr. Rustum Karanjia, Dr. Nancy Newman, Dr. Alfredo Sadun and Dr. Patrick Yu-Wai-Man provided the following responses to these questions. 

Is the LHON community at any greater risk from COVID-19?
There is no known increase in risk for people who have an LHON mutation with COVID-19. This is a novel virus and ALL people are at risk. It can cause severe breathing problems which can result in death. Avoiding contacts who are sick, and following the guidance of your public health officials, are the key to limiting the spread of COVID-19. The emphasis must be placed on not getting COVID-19 for your general health, regardless of your LHON genetic status.

Are individuals carrying a LHON mutation but currently asymptomatic at any greater risk of onset of vision loss if they should become affected by COVID-19?There is no specific data at this time to suggest that COVID-19 affects the optic nerve.

Are ophthalmologists and neuro-ophthalmologists seeing LHON patients?Professional medical organisations are strongly recommending that all ophthalmologists provide only urgent or emergent care. Planned appointments may be cancelled/rescheduled. While there is an effort to shift to video platforms for telehealth throughout the medical community, this may take some time, so please check with your care provider.