From left: Monica, 12 years post double lung transplant; Pisana, 21 years; Samantha, 19 years; Meri, 18 years; Alessandro, 20 years; Veronica, 19 years. In the middle stands Erna, a remarkable woman who provided unwavering support to us and our families during our time in Vienna, both before and after our life-changing surgeries. All of […]
Zambon, a multinational pharmaceutical company, announced today that it has completed enrollment in its two pivotal Phase 3 studies. The trials are designed to evaluate the safety and efficacy of Liposomal Cyclosporine A for Inhalation (L-CsA-i) for the treatment of BOS in adults following single lung (BOSTON-1) or double lung (BOSTON-2) transplantation. BOS is a
http://www.phocusonlifestyle.org is the “sister” website to that of the UK Pulmonary Hypertension, PHA UK. It is aimed at patients and peers supporting each other through stories. It also houses written resources covering a very wide range of issues related to living with pulmonary hypertension including:
Samantha Ciurlini’s journey with pulmonary arterial hypertension began in 2005 when she received her diagnosis. Twelve years ago, she underwent a life-changing double lung transplant surgery at the renowned Vienna General Hospital (AKH). Prior to her diagnosis, Samantha had a passion for volleyball and even played at a semi-professional level. Despite the challenges she faced,
Commentary by Prof. Olaf Mercier, M.D., Ph.D., Thoracic Surgeon, Marie Lannelongue Hospital, France Minimally invasive surgery has shown its value in lung resection surgery by reducing the impact of the surgical procedure and accelerating recovery after the operation. These techniques did not allow for lung transplantation, which is a more risky procedure because the connections
“Eroi anonimi” (“Anonymous heroes”) is an Italian online platform aimed at the promotion of organ donation among the general population. The slogan of this awareness initiative is “You can be a hero even without superpowers”. The platform features information about the importance of organ donation, on the different procedures that are used in Italy to
Starting on April 15, 2023, 46 member countries came together to compete in 17 sporting disciplines at the 24th World Transplant Games. This is the first reunion of the community of transplant recipients, living donors, donor families, friends and supporters after four years. For over 40 years, the World Transplant Games have demonstrated that health and fitness
Demand for organ transplantation is increasing all over the world, but there are not enough organs available to meet the need. This shortage of organs is now the limiting factor in treating many patients with chronic organ failure and has led to high numbers of patients on waiting lists. Sponsored by the European Directorate for
European Day for Organ Donation and Transplantation, October 10, 2023 Read Post »
The European Society for Organ Transplant (ESOT) Annual Congress is the most influential and major event of its kind and the largest gathering of the transplant community in Europe, bringing clinicians, surgeons, physicians, nurses, scientists, researchers and patients to review latest developments in transplantation. For the first time ever a patient/patient advocate has been included
European Society for Organ Transplant (ESOT) Annual Congress 2023, September 17-20, 2023 Read Post »
The European Society for Organ Transplant (ESOT)’s 2023 Congress, taking place in Athens, Greece, from September 17-20, has dedicated one of its five key domains to “SHARED DECISION MAKING, SHARED CARE”. The domain description reads as follows: “The delivery of healthcare is rapidly shifting towards a value-based system, driven by patients. We will focus on
The International Society for Heart and Lung Transplantation (ISHLT) is a not-for-profit, multidisciplinary, professional organization dedicated to improving the care of patients with advanced heart or lung disease through transplantation, mechanical support and innovative therapies via research, education and advocacy. It has around 3,000 members, from 50 countries, practicing in more than 23 different specialty
In a recent article for the European Public Health Alliance (EPHA) website guest authors Devi Mey, CEO, and Luciano Potena, President, of the European Society for Organ Transplant (ESOT), point out that gender, socioeconomic status, ethnicity, place of residence, level of health literacy, patient awareness, and inadequate training of healthcare providers (HCP) all exert a
The European Society for Organ Transplantation (ESOT) invited Pisana Ferrari to share her personal perspective as a lung transplant patient on the importance of patient engagement throughout the transplant journey (20+ years) and on why strengthening the relationship between the patient and the healthcare professional is so crucial in enhancing the transplant patient experience. The
An edition of the the Council of Europe EDQM’s annual “Newsletter Transplant” was published. It provides comprehensive information and data on donation and transplantation activities in 2021 from 79 countries worldwide. This report is the international reference in monitoring practice in donation and transplantation of substances of human origin. It is produced thanks to the
Noriko Murakami is the President of PHA Japan and the mother of Yukiko, a young PH patient who had a lung transplant surgery from a live donor. The PAHSSc is grateful to Mrs. Noriko Murakami for having agreed to contribute to its magazine Nefes (The Breath ) with insights on lung transplantation from a live
To date, several reports have underlined low rates of antibody response to mRNA COVID-19 vaccines in solid organ transplant (SOT) recipients. According to the authors of an article titled “Evaluation of the Kinetics of Antibody Response to COVID-19 Vaccine in Solid Organ Transplant Recipients: The Prospective Multicenter ORCHESTRA Cohort” (1) previous studies assessing the antibody
The Council of Europe and its Committee on Organ Transplantation support and recommend physical activity as a major way to improve the health status of transplant patients. Regular light-to-moderate exercise plays a crucial role in restoring both the physical and mental health of transplant recipients. The authors advise organ recipients ask their transplant doctors to
The “Guide to Lung Transplant” by AIPI, Italian patient association provides practical advice on the different phases of the patient journey: the ‘before’, ‘during’ and ‘after’. The last part of the book collects some patient testimonies. Download the AIPI “Guide to lung transplantation” at this link
Patient booklet on lung transplant by AIPI, Italian pulmonary hypertension association Read Post »
The European Society for Organ Transplant (ESOT) is delighted to launch the first edition of the ESOT Hackathon to identify and develop tools to serve the transplant patient community. Whether it is an idea, a scenario, a prototype, an app, an interface, a proof of concept or a turnkey solution, ESOT is looking for innovative
This booklet published by AIPI, the Italian Pulmonary hypertension association, contains an overview of the different forms of pulmonary hypertension and more specific information about pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension, including treatments and surgical solutions. The booklet can be downloaded from the AIPI website at this link Translation into other languages of
