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Leber's Hereditary Optic Neuropathy





United Mitochondrial Disease Foundation - LHON Symposium

The focus of the second annual symposium will be on Living with LHON.  While the agenda is in development, we plan to share the real-life experiences of those who are diagnosed with LHON and living fulfilling lives, family members, and unaffected carriers of LHON. You’ll have the opportunity to ask questions, and to learn first hand about tools and resources that have helped people overcome the challenges LHON presents. In addition to these real-life stories, experts will be on hand to provide an update on the latest advancements in LHON research and potential treatments.

Do you have a story to share?

By sharing the stories of those whose lives have been impacted by LHON, we hope to educate, inform and inspire event attendees. We plan to capture these real-life stories on video, to make them available to others who may begin their journey with LHON in the future. If you are planning to attend and are interested in participating as a panelist and would be willing to share your LHON story, please contact Lissa Poincenot at lhonpoince@aol.com.

Join us in June!

Please consider joining us for this unique opportunity to connect with others within the LHON community, share experiences, learn about tools and resources, and meet the experts. Building the LHON community is a critical step toward raising awareness, helping those affected, and ultimately working toward a cure.

More information regarding the event will be provided as it is finalized in the coming months.  The second annual LHON Symposium in conjunction with the United Mitochondrial Disease Foundation (UMDF) will take place on June 5, 2014 at the Sheraton Station Square in Pittsburgh, PA.  

Click here to learn how to make hotel reservations at the discounted UMDF Symposium rate.

Lissa Poincenot




Leber’s Hereditary Optic Neuropathy Patient Booklet

Leber’s Hereditary Optic Neuropathy Patient Booklet

>> Click to Download pdf Patient Booklet <<



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