Awareness-raising webinar on LHON

Vanessa FERREIRA, Head of Patient Advocacy Europe at Santhera Pharmaceuticals would like to invite you to the webinar on educating and raising awareness on Leber Hereditary Optic Neuropathy (LHON). Entitled “Uniting efforts to support the LHON patient and family community”, it will be held in English on Thursday 24 January 2019, 10.00-11.30 CET. The agenda is available below.

LHON is a severe mitochondrial optic neuropathy disease leading to central vision loss in both eyes. LHON is a rare eye disease presenting different challenges from those of more common diseases, especially for diagnosis, for community building, for awareness and for peer-to-peer support. The small number of patients and their geographic dispersion present significant challenges for the daily lives of LHON patients and their family members.

Collaborations with umbrella organisations like EBU and their national members, are of meaningful importance to strengthen cooperation among associations and to give support for LHON patients and their family members.

The webinar will be carried out through the Cisco WebEx virtual conference system. Connection instructions will be circulated to registered participants in January.

If you plan to participate, send your name, organisation and email address to by 16 January 2019.

For more information on LHON see also the recent EBU newsletter article.


  • Introduction to webinar and its speakers (10 minutes), By Dr Vanessa Ferreira, PhD, MBA (Head of Patient Advocacy Europe) and Mr Mokrane BOUSSAID (EBU Executive Director) 
  • Key learnings from two European Patient Advisory Board meetings for LHON, By Dr Vanessa FERREIRA (15 minutes)
  • LHON clinical development and management, By Dr. Xavier LLÒRIA, MD, LHON Medical Affairs Manager EU & ROW (20 minutes)
  • Helping EBU members identify and assist LHON patients, By Dr Vanessa FERREIRA (10 minutes)
  • 2 LHON patient testimonials (10 minutes/each)
  • Q&A (15 minutes)
  • Closing remarks