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International Foundation for Optic Nerve Disease

P. O. Box 777, Cornwall NY 12518, USA
Email: IFOND@aol.com
Phone [g voice]: 6572067250

 

LHON 2017 review

In this most recent LHON review the authors, including one of our Board Members, Dr Patrick Yu-Wai-Man, state:

"The past 5 years have seen a major shift in LHON research to clinical translation and there is renewed hope that the translational gap can be bridged by bringing together scientific communities with different skill sets and fostering greater collaborations with industry, patient-led organizations and national regulatory agencies, which until recently only had a limited understanding of the unique challenges of research into rare diseases. Experimental therapies by their very nature impose a degree of calculated risks on the participants, and the onus is on the physicians and researchers involved to clearly communicate the nature of the intervention being studied, the benefits that are being contemplated, and crucially, the grey areas that will only be answered with long-term follow-up. LHON causes devastating visual loss and the urgent need to develop and validate new treatment strategies should not cloud our judgement that patient safety should always remain the abiding central factor. There will inevitably be set-backs along the way, but the major breakthroughs being achieved in the fields of ocular phenotyping, disease modelling, drug screening and genomic manipulation all point towards a building momentum that will help drive LHON research forward."

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The International Foundation for Optic Nerve Disease
P. O. Box 777, Cornwall NY 12518, USA.
Phone [g voice]: 6572067250
Email: ifond@aol.com
Web site: http://www.ifond.org/


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