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


The LEROS Study

This is a clinical research study to look at an approved medication, called idebenone, to learn more about its long-term safety and effectiveness for the treatment of LHON. To find out if you are eligible to take part and to find the UK study locations please click here.