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 ‘Exploring the Power of Nutrition in Mitochondrial Diseases’

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, from 15:00 to 17:00 CEST.

Register here!

Speakers from Italy, Australia and Brazil will share information about the importance of nutrition for people living with mitochondrial diseases (mito). Dr Sanchez is an expert in Leber Hereditary Optic Neuropathy (LHON), a rare mitochondrial disease that affects the optic nerve and leads to severe vision loss, however much of the information shared in the webinar will be applicable to other types of mito.

Dr. Isabel Lopez Sanchez - Australia
Discussing the Australian approach to LHON

Dr Isabel Lopez Sanchez is a Principal Investigator at the Centre for Eye Research Australia (CERA) in Melbourne, where she leads research into mitochondrial biology and disease. She completed her PhD at the University of Western Australia and has undertaken postdoctoral research in the USA, Spain, and Sweden.

Her research focuses on how defects in mitochondrial genetics and metabolism contribute to disease, with a particular emphasis on vision loss. She leads work on LHON, identifying protective pathways that help prevent blindness.

Dr. Marzia Camera - Italy
Exploring the importance of proper nutrition in mitochondrial diseases

Marzia Camera is a biologist and nutritionist with extensive expertise in mitochondrial and neuromuscular diseases. Since 2012, she has been an active member and volunteer with Mitocon, providing specialised dietary guidance to adult patients. Marzia has developed a personalised nutrition panel based on genetic mutations, specifically designed to support mitochondrial function, with the goal of establishing a standardised diet for mitochondrial patients.

Her work combines advanced knowledge in molecular biology, clinical nutrition, and genetics. In addition to her clinical and voluntary roles, Marzia is also a secondary school science teacher, committed to education and scientific literacy in her community.

Professor Filipe Chicani - Brazil

Professor Filipe Chicani is CEO and Medical Director of the Paulista Institute of Ocular Pathologies (IPPO) and Neurovision in São Paulo, Brazil. He will speak about LHON and provide an update on the current work taking place in Brazil. A medical doctor with dual PhDs in Visual Sciences from UNIFESP and Johns Hopkins University, Professor Chicani has held academic posts in Brazil and the USA, including Associate Professor at the University of Southern California.

His clinical and research expertise spans neuro-ophthalmology, neuropathology, and refractive surgery, with extensive training across leading institutions in Brazil and the United States.

Join the conversation:

  • Learn about the latest research and developments in LHON
  • Discover the role of nutrition in managing mitochondrial diseases
  • Connect with others who understand the challenges and opportunities of living with LHON

Stay tuned for more information:
We’ll be sharing updates and insights from the event on our website and social media channels. Join us on 19 September to raise awareness and support for those affected by LHON.

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

LHON Awareness Day logo - Thursday, 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 (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

LHON Awareness Day logo - Thursday, 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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