About LHON Collective
LHON Collective is a global initiative dedicated to accelerating progress toward a cure for Leber Hereditary Optic Neuropathy (LHON) while improving the lives of people living with LHON.
We are a volunteer-led advocacy organization comprised of a diverse team of those affected by LHON and their families and friends, scientists, and medical professionals.
Due to its rare disease status, most people have never heard of LHON. In fostering partnerships with physicians, researchers, and other foundations, we share learnings and efficiencies to increase awareness of this rare, genetic disorder and identify therapeutic opportunities. Through our advocacy and partnerships, we are accelerating development of significantly improved therapies with the ultimate goal of ending LHON.
Living with LHON causes a range of physical and emotional challenges. In an international study of the emotional response to bilateral vision loss, the sadness of [vision loss from] LHON was comparable in severity and longer in duration than the loss of a close family member.¹
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In addition to vision loss, this mitochondrial disease can also include other symptoms termed LHON Plus.
LHON Collective provides community, education, and awareness. Above all, we support all those diagnosed with LHON, their families and loved ones, whether newly diagnosed or well into their lives post diagnosis, by providing a caring community and the most current information on medical advances and information on how to live their best lives.
There is currently no cure for LHON and LHON Plus, but we are committed to changing that, both for patients living with LHON or LHON Plus now and for those who will be diagnosed in the future. With your help, a cure is in sight.
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