LHON Awareness Day - Mito Patients

LHON Awareness Day banner! Thursday 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 will be on Friday 19th September.

LHON (Leber’s Hereditary Optic Neuropathy) poster.

Free webinar ‘Mito and Nutrition’

Nutritious food like vegetables, eggs, fruits and nuts are displayed from above

This year as part of LHON we will be hosting a webinar discussing the role of nutrition in living with mito-related conditions. The webinar will feature three key speakers (see below).

We would love for you to join us!

The webinar will be on Friday 19 September 2025 at 15:00 CEST.

Registration will start 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.

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

Technology can make an enormous difference to the quality of life for LHON sufferers. Watch IMP Chair Kira Mann along with board member (and LHON sufferer) Paula Morandi discuss this with technology expert Michele Landolfo. Michele is from the Cavazza Blind institute of Bologna and is also affected by LHON.

2020: One Condition Many Stories

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.