About us

Who we are

We are a patient-led support group for a rare condition called Leber's Hereditary Optic Neuropathy (LHON). Our group is comprised of LHON patients, family members and medical professionals. We are a registered charity with the Charity Commission (number 1157206) for England and Wales and our details can be found at the Register of Charities. To download a copy of the LHON Society Constitution, click this link: constitution document.

Our aims

To provide support and information to those impacted by LHON; patients, their family, friends and healthcare providers.

Provide guidance and representation on issues that affect the LHON community.

Promote up-to-date knowledge and understanding of LHON in the welfare, medical and scientific communities.

Facilitate research into understanding and seeking ways of preventing and ultimately reversing sight loss in LHON affected patients.

Our funders

The LHON Society is a charitable organisation funded by government initiatives and private fundraising activity.

We would like to thank GenSight Biologics Ltd. who supported the update of this website with a non-restricted grant in 2021/2022. Please know however that GenSight Biologics Ltd. have had no editorial control or influence in the content or messages contained within this website.