Mr Russell Wheeler


Russell is a UK citizen now resident in France.  He became involved in patient advocacy in 2012 following his 23 year old son’s sudden unexplained loss of sight, the diagnosis of which showed that his whole family was affected by a rare genetic disorder with no approved treatment.  In addition to his work for the UK based LHON Society, which he co-founded, Russell is an advocate for all rare eye conditions as a patient board member of ERN-EYE and for all rare diseases as a volunteer with EURORDIS, where he serves on the ERN (ePAG) Steering Committee and Research and Registries subcommittee, as well as the DITA and HTA Task forces. He also represents EURORDIS at EMA on the Patient and Consumer Working Party. He is active in general patient advocacy via his 5 years work on the “Patient Engagement in Research” special interest group at ISPOR and participation in the PFMD project, which recently resulted in a quality guidance tool to facilitate more effective and measurable patient engagement in healthcare.

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