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Screenshot of LHON Awareness Day event

  LHON Awareness Day - Saturday 19 September

The first LHON Awareness Day proved a success with a Facebook Live event being watched by viewers from across Europe, the US, Brazil and India.

Jo de Bry hosted the event and first introduced Elja van der Veer, Chair of IMP, spoke about the importance of a global voice and the work of IMP. Phil Yeske spoke about UMDF, the research it has funded and the work of a national mito organisation. Patients from the Netherlands, Sweden, Spain, Germany, Portugal, the USA, and Canada shared their experiences and were shining examples of patients who have not let LHON stop them achieving their dreams. Paula Morandi, from Italy closed the event, discussing her vision for a LHON Awareness Day. The event and the establishment of the day itself were driven by Paula, who has been an advocate for LHON patients for many years.

Thank you to the amazing participants and to everyone who watched the live event and posted comments.  

The event is available to watch on Facebook

Paula spearheaded the creation of a new LHON brochure for patients and medical professionals. The brochure is currently available in Italian and English and can be downloaded below.

 

 LHON Brochure in English                     LHON Brochure in Italian

 

 

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