Russell’s son lost his sight over a matter of weeks at the age of 24 due to LHON, a rare hereditary condition. There was very little advice about what was going on and why it was happening, and what was there was often conflicting. After struggling to set up a patient support group for two years, Russell and two colleagues attended Beacon’s first workshop. They were inspired by the stories they heard from other rare disease support groups and the LHON Society was born that evening. Russell has since attended multiple workshops, learning about NICE’s HST approval programme, European Commission funding for rare diseases, and working with pharma to better support patients.
“At heart I am a difficult person to please and can usually find criticism for almost anything. However I am really struggling to find any criticism here. Everyone I have spoken to feels very positive about the workshops.”