The 1st European Patient Groups Advisory Board meeting for Leber’s Hereditary Optic Neuropathy (LHON) joined patient groups from 7 different European countries. The patient advisory board enabled an in-depth understanding of LHON patient representatives’ perspectives that can be used to raise awareness for and foster research about LHON. Recommendations were presented according to the themes of the four sessions held during the patient group advisory board.
The main goals were to identify LHON organisational leaders and patient representative’s needs, priorities and experiences. In addition, to identify best practices undertaken by patient organisations; to assess the transferability of best practices to other contexts as a means to overcome existing needs; and, to foster community-building among LHON stakeholders.
Problems addressed by Initiative
People affected by Leber Hereditary Optic Neuropathy (LHON) have unmet needs concerning diagnosis, treatment, care, information, education and research. LHON patient organisations also experience the need to improve their membership and performance.