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Late last year the second of two forums took place with members of the LHON community invited to share their perspectives of living with the condition. 

The results of the forums have been published in two reports (see links below). They captured the key discussions and provided people living with LHON the important opportunity to connect on critical issues, share experiences and make recommendations. 

Increased awareness, improved materials, leveraging of LHON Awareness Day and developing stronger networks with key stakeholders, were some of the main themes discussed. 

Thank you to Chiesi for their ongoing support of the LHON community and in particular, this project. 


To download the June 2023 report, click here

To download the November 2023 report, click here

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