The annual congress of the ESOT – European Society for Organ Transplantation is the largest and most influential scientific event in the field of transplantation science in the world. This year, patients and their well-being took center stage, with many sessions dedicated to shared decision making, shared care, and patient-related issues. The congress was attended by over 3.000 participants, from 82 countries, across 6 continents. Five days packed with exciting sessions that delved deep into the cutting-edge innovations transforming transplant care: 90+ sessions, 14 specialty update symposia, 5 educational courses, 5 hands-on sessions,10 Live Studio sessions and 1.5k+ abstracts submitted.
Over 30 patient representatives attended the ESOT congress and were included in many sessions as speakers, chairs and moderators. For the first time ever a patient representative was nominated Honorary Co-Chair of the congress and asked to give the welcome address at the opening plenary. We are delighted that this patient representative was Pisana Ferrari, a former pulmonary hypertension patient and patient advocate, who is President of AIPI OdV, Italian Pulmonary Hypertension Association, and Secretary General of the Alliance for Pulmonary Hypertension (cover photo). Pisana co-chaired sessions on “Making a shift with shared decision making” and “Policy making, driving change in Europe”, was a panel member at a pre-congress course on immunosuppression and at a workshop on “Living your life after transplantation” and was invited to talk about her transplant journey at a Patient Storytelling session and Live Studio panel.
ESOT launched its Patient Inclusion Initiative in 2019 and has built a pan-European ‘hub’, the European Transplant Patient Organisation, ETPO, for patient organisations to help shape and influence healthcare professional education, healthcare policy and service delivery at the national and EU level. All activities in the context of the Patient Inclusion Initiative are planned by a steering group comprised of representatives of these organisations and ESOT leaders. Since 2019 patients have been involved as speakers, moderators, panelists, members of working groups or committees in a number of ESOT events, including webinars, symposia, the Transplant Learning Journey series (TLJ), the Academia and Hesperis courses, the ESOT hackathon, the ESOT-ETPO Alliance, the 2021 congress in Milan, the Extended Education and Scientific Programme for the 2023 congress committees.
A meeting of the ESOT-ETPO Alliance took place in Athens on the 18th of September, attended by 25 participants, representing 17 patient organisations. Three other pulmonary hypertension patient representatives were present at the congress in addition to Pisana Ferrari (second row, middle): Natalia Maeva, Bulgarian Society for Pulonary Hypertension BSPPH (next to her), Ioanna Alysandratou, Hellenic Community for Pulmonary Hypertension (center, sitting down), and Tadeja Bradac, Slovenian Pulmonary Hypertension Association (last row, center).
One of topics discussed was how patient associations and societies can have a role and an impact on the policies of their countries. The objective of the session was to share best practices and activities of interest for the network of patients’ organizations.
We commend ESOT for its commitment to fostering meaningful partnerships and collaboration between healthcare professionals and the patient community.