A meeting of several European transplant patient organizations took place on 14 September 2019 in Copenhagen. Attendees included patients, patient associations representatives and active members, and representatives of ESOT Sections and Committees (EDTCO – transplant coordinators; ELPAT – ethical, legal and psycho-social aspects of transplantation; ETAHP allied health care professionals).
19 organizations from 13 European countries were represented at the meeting.
The takeaway messages and key points of the meeting were used as a base to build the activities of the group.
The 11h EPITA* Symposium (25-26 January, 2021), for the second year, included in the official programme of the event a session dedicated to the Patient inclusion initiative.
Speakers included transplant professionals as well patients advocates, invited to share their experience.
The topics discussed were:
*EPITA is The European Pancreas and Islet Transplant Association of ESOT
Transplantation Learning Journey (TLJ 2.0), featured a full stream of mutual understanding and learning devoted to healthcare professionals and patients. In April 2020, ESOT launched a survey for transplant patients with the aim of gaining a deeper understanding of their experience and concerns. The programme of the learning workstream was developed on the basis of the findings from this survey; TLJ 2.0 speakers included transplant professionals as well as representatives of patient organisations, in line with ESOT’s commitment to patient inclusion.
Patients representatives and advocates were also actively involved in other workstream webinars and working groups, co-authoring some of the papers that will be submitted for publication in the upcoming months.
Within the framework of the ESOT Congress 2021 an ESOT twitter chat titled “Bridging the gap – the patient as a partner in ESOT” was held on March 17th, 2021.
The twitter chat focused on why it is essential that patients are an integral part of the transplant community. The guests of the chat were Colin White and Daniel Gallego, two active twitter ESOT Ambassador. The chat was moderated by Annemarie Weißenbacher and Olivier Aubert.
The ESOT-ETPO (European Transplant Patient Organisations) alliance is a collaborative entity established by the European Society for Organ Transplantation (ESOT) and Transplant Patient Organisations that aims to bring together healthcare professionals and people with transplants.
The mission of the ESOT-ETPO alliance is to promote realistic medicine in organ donation and transplantation. The alliance aims to achieve this by empowering people with transplants, encouraging and facilitating a meaningful dialogue between patients, organ donors and their families, caregivers and transplant professionals to ensure that their views and experiences are represented.
The ESOT Hesperis course is an introductory course on organ transplantation aimed at young professionals who are entering the field and wish to gain an advanced overview on the key areas of transplantation.
The 2021 online edition of Hesperis, which kicked off on Monday, March 22, features weekly live sessions where participants and faculty have the opportunity to interact and discuss hot topics and case studies.
Some of the sessions feature special guests from the world of transplantation, and we are delighted to announce that patient representatives will join us for two sessions.
Jan Shorrok, Executive Officer at Give a Kidney, will join the first live session of the unit on Organ donation, on April 30, 2021, to share her experience as a kidney donor and her work with Give a Kidney.
Pisana Ferrari (AIPI – Italian Pulmonary Hypertension Association) and Daniele Cima will join the second live session of the unit on Recipient management, on May 14, 2021, to share their experiences and perspectives as transplant patients.
ESOT is dedicated to the pursuit of clinical and research excellence and improving patient outcomes.
A core ESOT mission is to promote sharing of scientific information and building of evidence-based international practice, policies and medical guidelines.
To this aim, ESOT has decided to strengthen its engagement in the collection of data on organ transplantation, and is launching a multi-organ, pan-European registry on transplant recipients and living donors. The European Commission supports the development of the ESOT multi-organ registry and contributes to its preparation.
The registry will gather information on both transplant recipients and living donors, when applicable. In addition, it will feature a module for collecting information directly from patients (patient reported outcomes).
Subscribing to our patient focused mailing list is the best way stay up to date with all patient focused initiatives from or related to ESOT.
ESOT recognises the importance of value-based care as an essential part of delivering improved treatment for transplant patients and is committed to working alongside patient representatives to help shape equitable, sustainable, and appropriate learning resources that address the needs of the patient community. Our value-based care domain is led by leading experts in the field of organ transplantation and focuses on topics such as:
The ESOT Congress 2021 will be held from 29th August until 1st September, 2021 in Milan, Italy.
Save the date: August 28th, 2021.
More information coming soon
View the webinar recording to hear about the main concerns of transplant patients and transplant professionals and to learn about strategies to better cope with the uncertainty arising from the COVID-19 pandemic.
Listen to moderators Anna Forsberg and Peter Carstedt address some of the recurring concerns raised by participants.
Listen to panellists Giuseppe Feltrin and Marjo Lehtonen address some of the recurring concerns raised by participants.
View the webinar recording to hear about the main issues surrounding uncertainty whilst on a transplant waiting list. The first part of the webinar will include talks by a transplant professional and a transplant recipient, presenting their perspectives on waiting list-related uncertainties
View the webinar recording to hear about the main issues surrounding uncertainty in offering and accepting an organ. The aim of this webinar was twofold:
View the report to get an overview of the main topics discussed during the webinar
Representatives of patient organisations and healthcare professionals shared their experiences and exchanged ideas on the topic of “Uncertainty from a patient perspective” during the main sessions of the Learning Workstream at TLJ 2.0.