LHON Awareness Day banner! Saturday 19 September

LHON stands for Leber’s Hereditary Optic Neuropathy. In LHON the optic nerve is particularly vulnerable to mitochondrial defects because of the high-energy requirements and the need to keep the retina transparent to light.

LHON has a prevalence of 1/25,000 to 1/50,000 and it is more frequent in males.

Every year we work to draw more attention to this condition. Help us shine a light on LHON.

This year LHON Awareness was on Saturday 19 September.

LHON (Leber’s Hereditary Optic Neuropathy) poster.

LHON Awareness Day Webinar
19 September 2026, 1 - 3pm CET

The LHON Awareness Day Webinar on 19 September (1–3pm CEST) will offer an inspiring and highly interactive session focused on this year’s theme: Best practices in LHON – stories from the community.

This live event brings together two leading experts, Prof. Chiara La Morgia and Prof. Patrick Yu‑Wai‑Man, alongside three individuals who will share their personal experiences of living with LHON. Their combined perspectives will provide a rich, practical understanding of current clinical approaches, real‑world challenges, and the lived impact of vision loss.

The webinar is designed to be accessible and engaging, with opportunities for audience interaction, and we hope to offer translation options to support wider participation. If you want to deepen your knowledge of LHON and hear directly from experts and the community, we warmly encourage you to register and join this important event.

Registrations will open soon!

Library of past LHON related webinars

Each year we host a live webinar on issues related to LHON and mitochondrial disease. These webinars include the voices of those affected by mito conditions, researchers, clinicians and pharmaceutical companies.

Each year we host a live webinar on issues related to LHON and mitochondrial disease.

Whether you’re recently diagnosed with LHON or seeking to broaden your understanding of this condition, you may find these videos useful to watch.

2025: Exploring the Power of Nutrition in Mitochondrial Diseases

'Exploring the Power of Nutrition in Mitochondrial Diseases' slide from thw webinar.

Watch experts from Italy, Australia and Brazil speak about the impact of diet in mitochondrial function and give updates on current research.

2024: Gene Therapy: Where are we now?

'Our Objectives' slide from the 2024 webinar. Representatives from mito related organisations are shown on the right side of the screen

Webinar’s speakers included pharmaceutical companies involved in the development of gene therapy for people with LHON, the EMA, a researcher and clinician, and a patient who has received gene therapy as part of a clinical trial.

2023: LHON and the Family

'LHON and the family' 2023 webinar poster with green and pink icons of cells, light bulb and microscope

Hear members of the international LHON community talk about the effect the disease has on them and their family.

2022: Research and Rehabilitation

'Advances in using stem cells to study and treat LHON' slide from the 2022 webinar. An image of Associate Professor Wong is displayed in the right corner of the screen

Meet Associate Professor Wong who will tell us about his exciting research into LHON, and how it could change the lives of many. What is rehabilitation after vision loss? Hear from a rehabilitation expert, Krister Inde about what is possible.

2021: The Importance of Technology for LHON Patients

LHON Awareness Day logo - Saturday, 19 September

Technology can make an enormous difference to the quality of life for LHON sufferers. Watch IMP Chair Kira Mann along with board member, Paula Morandi, discuss this with technology expert Michele Landolfo, from the Cavazz Blind Institute of Bolgna.

2020: One Condition Many Stories

LHON Awareness Day logo - Saturday, 19 September

Jo de Bry from IMP hosts 10 different people affected by LHON as they share their stories of diagnosis and day to day life with the condition.

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