Edmund Jessop

Edmund Jessop trained in public health and has worked for the National Health Service in England for the past 30 years.

Since 2002, Edmund has been medical adviser to the National Commissioning Group which plans, funds and monitors services for patients with very rare disease. This has included decision making on the so-called ‘ultra-orphan’ drugs as well as other very specialised technologies.

He is also a Fellow of the UK Faculty of Public Health and has taught courses on public health including health economics and health technology assessment for over 15 years.

Edmund was a member of the Rare Disease Task Force and has been nominated as the UK representative to the new EU Committee of Experts on Rare Disease (EUCERD).


The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases