The European Medicines Agency (EMA) has issued a call for patient representatives to join the Committee for Orphan Medicinal Products (COMP)

The European Commission has launched a call for expressions of interest to represent patients’ organisations in European Medicines Agency’s (EMA) Committee for Orphan Medicinal Products (COMP). This is a very important opportunity for patients to have a role in the approval of orphan medicinal products! The call aims to fill three positions nominated by the […]

The European Medicines Agency (EMA) has issued a call for patient representatives to join the Committee for Orphan Medicinal Products (COMP) Read Post »

PHA Europe held its Annual Pulmonary Hypertension European Conference (APHEC) on November 8-12, 2023, featuring representatives of the scientific, patient, and health care communities

The European Association for Pulmonary Hypertension, PHA Europe, held its Annual European Pulmonary Hypertension Conference (APHEC) in Barcelona from 8-12 November 2023 in Castelledefels, Barcelona (Spain). The conference featured presentations by distinguished members of the scientific community (Prof. Adam Torbicki, Poland; Prof. Jean-Luc Vachiéry, Belgium; Prof Joanna Pepke-Zabka, UK; Prof. Jimmy Ford, USA; Prof. Dr.

PHA Europe held its Annual Pulmonary Hypertension European Conference (APHEC) on November 8-12, 2023, featuring representatives of the scientific, patient, and health care communities Read Post »

Interesting initiative to adapt the 6 minute walk test, PRO measures and finger prick samples for remote use in pulmonary arterial hypertension clinical trials

The most familiar exercise capacity test in the field of pulmonary arterial hypertension is the 6-Minute Walk Test, where patients walk up and down a corridor for 6 minutes while their physiological parameters and distance walked are measured. This test is also used in other, different types of diseases, and Dr Joe Newman, a clinical

Interesting initiative to adapt the 6 minute walk test, PRO measures and finger prick samples for remote use in pulmonary arterial hypertension clinical trials Read Post »

“Pulmonary arterial hypertension and COVID-19: piecing the puzzle”, Respiratory Medicine and Research, November 2023

A recent article titled “Pulmonary arterial hypertension and COVID-19: piecing the puzzle”, published in Respiratory Medicine and Research, summarises the existing literature on the clinical presentation of COVID-19 in patients with pulmonary arterial hypertension, focusing on shared pathobiology, clinical outcomes, potential treatment strategies, and the need for further research in understanding and managing these conditions.

“Pulmonary arterial hypertension and COVID-19: piecing the puzzle”, Respiratory Medicine and Research, November 2023 Read Post »

Artificial intelligence could help restore the essential humaneness in medicine by providing the gift of time, The Lancet, October 21, 2023

In the age of artificial intelligence, chat bots and automated services, our quest for empathy becomes more pressing than ever. Counterintuitively, Dr. Eric J. Topal, an American cardiologist, scientist, and best selling author, claims that artificial intelligence has the potential to enhance empathy, particularly in the vital relationship between patients and clinicians. In a recent

Artificial intelligence could help restore the essential humaneness in medicine by providing the gift of time, The Lancet, October 21, 2023 Read Post »

The Impact and Future of European Reference Networks (ERNs) discussed at a conference in Bilbao, Spain, on October 10-11, 2023

The European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources. The first ERNs were launched in 2017, involving more than 900 highly-specialised healthcare units from over 300 hospitals in 26 EU

The Impact and Future of European Reference Networks (ERNs) discussed at a conference in Bilbao, Spain, on October 10-11, 2023 Read Post »

Genetic counselling and testing in pulmonary arterial hypertension (PAH): a consensus statement on behalf of the International Consortium for Genetic Studies in PAH, European Respiratory Journal

Aside from the commonly observed BMPR2 gene (bone morphogenetic protein receptor 2), there are several other genes, each falling into distinct functional categories, that have been identified as contributors to pulmonary arterial hypertension development. This has led both specialized and general healthcare providers to encounter various inquiries about the necessity, methods, and potential outcomes of

Genetic counselling and testing in pulmonary arterial hypertension (PAH): a consensus statement on behalf of the International Consortium for Genetic Studies in PAH, European Respiratory Journal Read Post »

A European Society for Organ Transplant (ESOT) call to action for a a European effort to monitoring health of patients after transplantation

The steering group of the European Society for Organ Transplant (ESOT) patients’ inclusion initiative invites European transplant patient organizations to endorse and spread the call: Monitoring health after transplantation: A call for a European effort to collect follow up data on transplant recipients and living donors. This call urges organizations dealing with transplantation to work

A European Society for Organ Transplant (ESOT) call to action for a a European effort to monitoring health of patients after transplantation Read Post »

The “Pulmonary Hypertension Global Patient and Carer Survey” (PH GPS) is launched, October 16, 2023

This survey, the first of its kind, has been designed to help improve global understandings of how pulmonary hypertension affects the lives of patients and in what ways pulmonary hypertension care needs to be improved. The survey has been written by a multidisciplinary panel of pulmonary hypertension specialists and patient group advocates from the pulmonary

The “Pulmonary Hypertension Global Patient and Carer Survey” (PH GPS) is launched, October 16, 2023 Read Post »

Findings from a decade-long study, published in the August 2023 edition of “Transplant International”, offer promise for a significant surge in the availability of lungs for transplant

A study titled “Cytokines Removal During Ex-Vivo Lung Perfusion: Initial Clinical Experience”, by researchers Boffini et al. was published in August 2023 in Transplant International. Covering a period of 10 years, from 2011 to 2020, research by has demonstrated for the first time – on an unparalleled large case series of 54 lung treatments intended

Findings from a decade-long study, published in the August 2023 edition of “Transplant International”, offer promise for a significant surge in the availability of lungs for transplant Read Post »

“Patient partnership in cardiovascular clinical trials”, European Heart Journal

This paper, titled “”Patient partnership in cardiovascular clinical trials”, published in the European Heart Journal, assesses current initiatives and identifies opportunities for furthering meaningful patient involvement in cardiovascular clinical research. According to the authors, patients are fundamentally the ultimate beneficiaries of medical treatments, and their active engagement as contributors and decision-makers in the product development

“Patient partnership in cardiovascular clinical trials”, European Heart Journal Read Post »

Patient Perspectives in the French RHU DESTINATION 2024 project on Chronic Thromboembolic Pulmonary Hypertension (CTEPH) Management

RHU DESTINATION 2024 is a hospital and university research funded by the French government. It is led by Prof. Marc Humbert, Director of the French National Pulmonary Hypertension Reference Centre, and coordinated by the Assistance Publique-Hôpitaux de Paris (Bicêtre Hospital). Partners include the University of Paris-Saclay, Inserm, Marie Lannelongue Hospital, as well as three private

Patient Perspectives in the French RHU DESTINATION 2024 project on Chronic Thromboembolic Pulmonary Hypertension (CTEPH) Management Read Post »

Highlights from the European Respiratory Society (ERS) 2023 Congress on the topic of pulmonary hypertension by Prof. Marc Humbert, Director of the French National Pulmonary Hypertension Centre

The European Respiratory Society (ERS) has issued an eight-episode series offering summaries of disease specific content from its annual congress which took place in Milan, Italy, September 20-23, 2023 In one of the episodes, European Respiratory Society (ERS) Past President Prof. Marc Humbert, Director of the French National Pulmonary Hypertension Centre, selects his highlights from

Highlights from the European Respiratory Society (ERS) 2023 Congress on the topic of pulmonary hypertension by Prof. Marc Humbert, Director of the French National Pulmonary Hypertension Centre Read Post »

The lay summary of the European Society of Cardiology and European Respiratory Society clinical guidelines on pulmonary hypertension is now available in 11 languages

Did you know that the lay summary of the European Society of Cardiology and European Respiratory Society clinical guidelines on pulmonary hypertension is now available in 11 languages: English, French, German, Greek, Italian, Polish, Portuguese (Portugal), Russian, Spanish, Romanian, Ukrainian. The English version of the lay summary was developed with the active collaboration of the two

The lay summary of the European Society of Cardiology and European Respiratory Society clinical guidelines on pulmonary hypertension is now available in 11 languages Read Post »

Patients take centre stage at the Annual Congress of the European Society for Organ Transplant in Athens, September 17-20, 2023

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

Patients take centre stage at the Annual Congress of the European Society for Organ Transplant in Athens, September 17-20, 2023 Read Post »

New European Lung Foundation (ELF) “Pulmonary Hypertension Patient Advisory Group”, PAG, set up!

The Alliance for Pulmonary Hypertension has been a proud member of the European Lung Foundation (ELF) Patient Organisation Network since May 2023 (see our article at this link). More recently, the European Lung Foundation has set up a new Patient Advisory Group dedicated specifically to pulmonary hypertension. The ELF’s Patient Advisory Groups, also known as

New European Lung Foundation (ELF) “Pulmonary Hypertension Patient Advisory Group”, PAG, set up! Read Post »

Want to find out more about Medicines R & D and Patient Engagement? Check out the EUPATI Toolbox, now available in 14 languages!

“EUPATI” stands for European Patient Academy on Therapeutic Innovation. Its mission is to provide accessible, innovative and inclusive education that empowers patients and patient representatives with the right knowledge, skills and competencies to effectively engage and partner with all other stakeholders in medicines R&D. The EUPATI Toolbox is organised in two main areas: Medicines R&D

Want to find out more about Medicines R & D and Patient Engagement? Check out the EUPATI Toolbox, now available in 14 languages! Read Post »

The 2023 PHA Canada Research scholarship application process opens September 1, 2023!

PHA Canada’s scholarship program awards up to $10,000 to outstanding trainees in support of their research into the field of pulmonary hypertension. This research program allows emerging pulmonary hypertension researchers—whose projects will contribute to the better understanding or treatment of pulmonary hypertension—to fully delve into their scientific studies, in collaboration with specialized pulmonary hypertension clinics

The 2023 PHA Canada Research scholarship application process opens September 1, 2023! Read Post »

The fascinating story about how the first ever right heart catheterisation was performed by a German physician, Dr. Werner Forssman, on himself!

Right Heart Catheterization (RHC) is the gold standard for diagnosing and classifying pulmonary hypertension. The story behind its invention is captivating, highlighting the remarkable strides that individuals driven by a passion for science and innovation can take, often braving risks to their own well-being and even lives! Werner Forssmann was born in Berlin in 1904,

The fascinating story about how the first ever right heart catheterisation was performed by a German physician, Dr. Werner Forssman, on himself! Read Post »

Lancet publishes ground-breaking three-paper series on pulmonary hypertension, the first of which is co-authored by a patient and patient advocate!

📣 Yesterday, August 14 2023, the The Lancet published a ground-breaking three-paper series on pulmonary hypertension. 1️⃣ In the first paper, Prof. Marc Humbert and colleagues provide an overview of the pathophysiology of pulmonary arterial hypertension, current therapeutic approaches, and emerging treatment options, with a forward-looking discussion of innovative solutions for future clinical trials. We

Lancet publishes ground-breaking three-paper series on pulmonary hypertension, the first of which is co-authored by a patient and patient advocate! Read Post »

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