Vice President of EURORDIS
Avril Daly is the CEO of Retina International, the global patient-led umbrella group dedicated to the promotion of research into Rare and Inherited as well as Age-related forms of retinal degenerative conditions. She previously held the position of CEO at Fighting Blindness Ireland.
She is the Vice President of EURORDIS (Rare Disease Europe) and chairperson of the Genetic and Rare Disorders Organisation (GRDO), the Irish National Alliance for Rare Diseases. In 2011 Avril was appointed by the minister for health to the steering committee working towards the development of the Irish National Plan for Rare Diseases, (2014) and now sits on its oversight committee and represents the patient voice on the working group of the Clinical Programme for Rare Diseases at the Irish Health Service Executive (HSE). Avril was previously co-chair of the National Vision Coalition in Ireland.
Avril was a founding board member of the Medical Research Charities Group (MRCG) and, the Irish Platform for Patients’ Organisations, Science and Industry (IPPOSI).
Avril was diagnosed with the rare retinal condition Retinitis Pigmentosa in 1998.