LHON Canada is a “Patient Support Group”, in the process of becoming a registered Charitable Organization, incorporated in Ontario and is managed by a Board of individuals from a wide range of backgrounds. They have extensive experience in their respective fields of expertise and share a passion to advance innovation in the treatment of those affected by inherited mitochondrial disorders – specifically Leber Hereditary Optic Neuropathy (LHON). Board members are appointed for a period of two years. Their mandate can be renewed only once in order to ensure synergies and complementarities between the Organizationand the Ottawa Hospital Eye Institute. All Board members work on a voluntary basis and do not receive salary or any other form of financial remuneration for their activities, other than travel expenses as required by their home location.
A Secretariat assists the Board in carrying out the operational aspects of the Organization’s work. In addition, a series of Strategic Committees make recommendations to the Organization Board; regarding the development and implementation of activities and expenditures.