We extend our sincere appreciation to Dr. Edmund Jessop for his congratulatory address and for recognizing the significant work of the Institute for Rare Diseases on the occasion of our 20th anniversary. This significant event will be celebrated at the XV National Conference on Rare Diseases and Orphan Drugs, taking place on September 13-14, 2024, in Plovdiv. His acknowledgment is deeply valued and highlights our steadfast dedication to advancing research and enhancing care for patients with rare diseases.
Edmund Jessop has been a prominent figure in public health within the NHS in England since 1981, serving in a range of roles at district, regional, and national levels. Since 2002, he has been the medical adviser for a team responsible for planning, funding, and monitoring services for patients with very rare diseases. His expertise has been pivotal in decision-making regarding “ultra-orphan” drugs and other highly specialized technologies. As Vice President of the UK Faculty of Public Health (FPH), Edmund has contributed significantly to the field through his teaching on health economics and health technology assessment over the past 15 years. At FPH, he oversees professional standards and revalidation, and chairs the Standards Committee. Additionally, Edmund has been an influential member of the Rare Disease Task Force (RDTF) for the European Commission and a UK representative to the EU Committee of Experts on Rare Disease (EUCERD).