Mapping the main stakeholders in pulmonary hypertension care, a brief summary by Pisana Ferrari

The main stakeholders in pulmonary hypertension care, a brief summary Author: Pisana Ferrari Last updated December 13, 2024 The following is a concise overview of key stakeholders in the field of pulmonary hypertension care at a European and international level. This list serves as a starting point and will be regularly updated to reflect the […]

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“The ‘Ten Commandments’ of the 2022 ESC/ERS Guidelines for the diagnosis and treatment of pulmonary hypertension”, European Heart Journal, February 1, 2023

An interesting summary of the key ten take home messages of the ESC/ERS clinical guidelines for the diagnosis and treatment of pulmonary hypertension by six members of the Task Force who developed them (2020-2022). Features a useful infographic. Collaboration with patient associations is recommended in commandment n°10! A pdf version of the article can be

“The ‘Ten Commandments’ of the 2022 ESC/ERS Guidelines for the diagnosis and treatment of pulmonary hypertension”, European Heart Journal, February 1, 2023 Read Post »

In his speech at the CPLF, French Language Pulmonology Congress, Prof. Marc Humbert highlights the importance of expert center–patient association partnerships

The Congrès de Pneumologie de Langue Française (CPLF) is the 3rd largest world pulmonology congress, after the ATS (American Thoracic Society) and the ERS (European Respiratory Society). This year it was held from 27 to 29 January 2023 in the city of Marseille. Prof. Marc HUMBERT, President of the European Respiratory Society, coordinator of RespiFIL,

In his speech at the CPLF, French Language Pulmonology Congress, Prof. Marc Humbert highlights the importance of expert center–patient association partnerships Read Post »

A video posted on Instagram explains how pulmonary circulation works in a very unusual, creative way, January 27, 2023

The video, posted by mukuls_pharmacology, an educational Instagram account, shows how blood flows through the heart into the lungs (persons dressed in blue) and then back from the lungs, after being enriched with oxygen (persons dressed in red), into the body. Interesting! See video at this link “POUMONS” means “LUNGS” in English

A video posted on Instagram explains how pulmonary circulation works in a very unusual, creative way, January 27, 2023 Read Post »

Jen Cueva, a pulmonary hypertension patient and former nurse, talks about the benefits of clinical trials in a recent article for “Pulmonary hypertension News”, January 25, 2023

Commentary by Pisana Ferrari Jen Cueva works part time as a columnist for Pulmonary Hypertension News and as a co-moderator of the PH News Forums. As a pulmonary hypertension patient with a nursing background she has gained unique insights into life with the disease and its challenges. Her mission is to help others become more informed and educated so

Jen Cueva, a pulmonary hypertension patient and former nurse, talks about the benefits of clinical trials in a recent article for “Pulmonary hypertension News”, January 25, 2023 Read Post »

Pisana Ferrari and Gergely Meszaros discuss their contribution to the new ESC/ERS pulmonary hypertension guidelines in an interview for the Belgian Flemish Association’s January 2023 newsletter

The Belgian Flemish Association, Pulmonale hypertentie vzw, has published an interview with patient advocates Gergely Meszaros (PHA Europe) and Pisana Ferrari (AIPI, Italian Pulmonary Hypertension Association, Italy) in the latest edition of their magazine “ADEMLOS”. In this interview Gergely and Pisana discuss their contribution to the new ESC/ERS pulmonary hypertension guidelines, and in particular: The

Pisana Ferrari and Gergely Meszaros discuss their contribution to the new ESC/ERS pulmonary hypertension guidelines in an interview for the Belgian Flemish Association’s January 2023 newsletter Read Post »

Youth involvement in patient organisations, an online survey by the European Patients Forum (EPF)

With this survey the EPF Youth Group (YG) of the European Patients Forum (EPF) aims to collect key information on the importance and impact of young patient’s involvement in patient organisations. It is not always easy to involve young patients in patient organisations, as many of us who run patient associations well know. We hope this survey

Youth involvement in patient organisations, an online survey by the European Patients Forum (EPF) Read Post »

International Society for Heart and Lung Transplantation, ISHLT, Annual Meeting and Scientific Sessions, April 10-13, 2024, Prague (Czech Republic)

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

International Society for Heart and Lung Transplantation, ISHLT, Annual Meeting and Scientific Sessions, April 10-13, 2024, Prague (Czech Republic) Read Post »

“Is Organ Transplant equal for everyone?” Guest article by Devi Mey, CEO, and Luciano Potena, President, European Society for Organ Transplantation (ESOT), December 15, 2022

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

“Is Organ Transplant equal for everyone?” Guest article by Devi Mey, CEO, and Luciano Potena, President, European Society for Organ Transplantation (ESOT), December 15, 2022 Read Post »

Gossamer Bio announces seralutinib meets primary endpoint in phase 2 TORREY study in pulmonary arterial hypertension, December 6, 2022

On December 6, 2022, Gossamer Bio, Inc. announced topline results for the TORREY Phase 2 study of seralutinib in patients with pulmonary arterial hypertension. Seralutinib is a tyrosine kinase inhibitor targeting PDGFRα/β, CSF1R, and c-KIT, specifically designed to be delivered via dry powder inhaler for the treatment of pulmonary hypertension. Read more about the TORREY

Gossamer Bio announces seralutinib meets primary endpoint in phase 2 TORREY study in pulmonary arterial hypertension, December 6, 2022 Read Post »

“The evolving landscape of pulmonary arterial hypertension clinical trials”, The Lancet, 26 November–2 December 2022

This article is not freely available but a pdf version can be purchased on the Lancet web page at this link A summary of the article is provided which explains that pulmonary arterial hypertension trial design has shifted from short-term sub-maximal exercise capacity as a primary endpoint, to larger clinical event-driven trial outcomes. Event-driven pulmonary

“The evolving landscape of pulmonary arterial hypertension clinical trials”, The Lancet, 26 November–2 December 2022 Read Post »

Want to find out more about sotatercept, a potential new pulmonary arterial hypertension treatment? Check out this interview with Dr. Mark Tushner, care of the Pulmonary Hypertension Association UK (PHA UK), November 2022

the Pulmonary Hypertension Association UK (PHA UK) has recently posted a very informative interview with Dr Mark Toshner, pulmonary hypertension Specialist and Associate Professor, about sotatercept, a promising new pulmonary arterial hypertension drug (results for the STELLAR study were announced recently) which is the first to target the root cause of the disease. The video

Want to find out more about sotatercept, a potential new pulmonary arterial hypertension treatment? Check out this interview with Dr. Mark Tushner, care of the Pulmonary Hypertension Association UK (PHA UK), November 2022 Read Post »

“Balloon pulmonary angioplasty versus riociguat for the treatment of inoperable chronic thromboembolic pulmonary hypertension (RACE): a multicentre, phase 3, open-label, randomised controlled trial and ancillary follow-up study”, The Lancet, October 2022

RACE is a (completed) phase 3, multicentre, open-label, parallel-group, randomised controlled trial done in 23 French centres of expertise for pulmonary hypertension enrolling treatment-naive patients aged 18–80 years with newly diagnosed, inoperable chronic thromboembolic pulmonary hypertension and pulmonary vascular resistance of more than 320 dyn·s/cm5. A summary of the article is available on The Lancet

“Balloon pulmonary angioplasty versus riociguat for the treatment of inoperable chronic thromboembolic pulmonary hypertension (RACE): a multicentre, phase 3, open-label, randomised controlled trial and ancillary follow-up study”, The Lancet, October 2022 Read Post »

“Why patient empowerment should be at the heart of organ transplantation: a personal perspective”, by Pisana Ferrari, in Hospital Health Care Europe, October 18, 2022

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

“Why patient empowerment should be at the heart of organ transplantation: a personal perspective”, by Pisana Ferrari, in Hospital Health Care Europe, October 18, 2022 Read Post »

First therapy to treat transplant patients with post-transplant lymphoproliferative disease approved for marketing authorisation by the European Medicines Agency (EMA), October 14, 2022

On October 14, 2022, the European Medicines Agency (EMA) announced that it has recommended a marketing authorisation in the EU for Ebvallo (tabelecleucel), a medicine used to treat adults and children from 2 years of age who, after receiving an organ, or a bone marrow-transplantation, develop a blood cancer called Epstein-Barr virus positive post-transplant lymphoproliferative disease

First therapy to treat transplant patients with post-transplant lymphoproliferative disease approved for marketing authorisation by the European Medicines Agency (EMA), October 14, 2022 Read Post »

An edition of the Council of Europe EDQM’s annual “Newsletter Transplant” has been published, September 29, 2022

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

An edition of the Council of Europe EDQM’s annual “Newsletter Transplant” has been published, September 29, 2022 Read Post »

The 2022 “Clinical Guidelines for the diagnosis and treatment of pulmonary hypertension” by the European Society of Cardiology (ESC) and European Respiratory Society (ERS)

The work of two years of the Task Force in charge of the new European Society of Cardiology (ESC) and European Respiratory Society (ERS) joint Clinical Guidelines for the diagnosis and treatment of pulmonary hypertension has finally come to an end. The new guidelines were officially presented yesterday at the ESC Annual Congress in Barcelona

The 2022 “Clinical Guidelines for the diagnosis and treatment of pulmonary hypertension” by the European Society of Cardiology (ESC) and European Respiratory Society (ERS) Read Post »

“What’s new in the 2022 ESC/ERS clinical guidelines for pulmonary hypertension, and what it was like to be the first patient ever to be included in the guidelines Task Force”, by Pisana Ferrari

Clinical practice guidelines present relevant evidence to help health care professionals in making decisions about therapeutic options and include recommendations intended to optimise patient care. They are updated on a regular basis to take into account the latest evidence and practice. The European Society of Cardiology (ESC) and the European Respiratory Society (ERS) joint clinical

“What’s new in the 2022 ESC/ERS clinical guidelines for pulmonary hypertension, and what it was like to be the first patient ever to be included in the guidelines Task Force”, by Pisana Ferrari Read Post »

European Respiratory Society (ERS) Annual Conference 2022, September 4-6, 2022

The European Respiratory Society (ERS)’s Annual Conference 2022 is taking place in Barcelona on September 4-6, 2022. The NEW ERS/ESC guidelines on the diagnosis and treatment of pulmonary hypertension will be presented during the congress on September 5, session 343 and a number of other sessions on PH are also planned. Browse the programme at

European Respiratory Society (ERS) Annual Conference 2022, September 4-6, 2022 Read Post »

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