Findings of European Patient Forum (EPF) survey on the implementation of EU legislation on medical devices now published

The EU Medical Device Regulation (MDR) and In Vitro Diagnostic Regulation (IVDR), introduced in 2017, aims to enhance patient safety, transparency, and information through stricter quality standards, performance evaluations, and oversight across the device lifecycle. But not all changes have been fully put into action, and many patients are still waiting to see benefits. To […]

Findings of European Patient Forum (EPF) survey on the implementation of EU legislation on medical devices now published Read Post »

Pulmonary arterial hypertension: A practical roadmap from diagnosis to treatment, Prof. Jean-Luc Vachiéry and Prof. Manreet Kanwar, Touch Respiratory

In an insightful discussion organised by Touch Respiratory, an E-Learning Provider , Prof. Jean-Luc Vachiery and Prof. Manreet Kanwar consider the state of the art in pulmonary arterial hypertension, including disease diagnosis, risk stratification, and key considerations for optimizing treatment and patient care in an evolving therapeutic landscape. Prof. Manreet Kanwar is Co-Director, Division of

Pulmonary arterial hypertension: A practical roadmap from diagnosis to treatment, Prof. Jean-Luc Vachiéry and Prof. Manreet Kanwar, Touch Respiratory Read Post »

Video recording of the ERN ReCONNETT webinar on the screening and treatment of systemic sclerosis-association pulmonary arterial hypertension now available, Prof.s Erich Hachulla and Olivier Sitbon

The video recording of the latest ERN ReCONNET webinar on the screening and treatment of systemic sclerosis-associated pulmonary arterial hypertension is now available at this link Guest speakers were Prof. Eric Hachulla from the Lille University Hospital, France and Prof. Olivier SITBON from Hôpital Bicêtre in Le Kremlin – Bicêtre, France, moderated by Prof. Smith

Video recording of the ERN ReCONNETT webinar on the screening and treatment of systemic sclerosis-association pulmonary arterial hypertension now available, Prof.s Erich Hachulla and Olivier Sitbon Read Post »

The US Pulmonary Hypertension Association launches a new podcast series called “PH Insights”

The Pulmonary Hypertension Association in the U.S. has introduced a new podcast titled “PH Insights.” This podcast aims to elevate patient voices and foster in-depth discussions with healthcare professionals on various aspects of pulmonary hypertension. In the debut episode, “Filling in the Blanks: Understanding Pulmonary Hypertension, Part 1,” Jenny Yang, an assistant professor of medicine

The US Pulmonary Hypertension Association launches a new podcast series called “PH Insights” Read Post »

Orgamites, a free global educational program about organ donation and transplantation for children aged 5-11, now being started in UK schools

The “Orgamites Mighty Education Programme” is a free global organ donation and health education programme for children aged 5-11. It uses educational resources, tools, toys, and tech to inspire and equip more students, teachers, and families everywhere to talk more about organ donation and how to take better care of our health. The Orgamites programme

Orgamites, a free global educational program about organ donation and transplantation for children aged 5-11, now being started in UK schools Read Post »

Colleen Brunetti, pulmonary arterial hypertension patient and patient advocate, speaks about her experience with the condition and clinical trials, May 2024

Colleen Brunetti, Past Chair of the Board of the Pulmonary Hypertension Association, speaks about her experience with the condition and taking part in clinical trials in this video, published on the European Lung Foundation YouTube channel. Read more about Colleen and her book “Defining the new normal: A guide to becoming more than your diagnosis”

Colleen Brunetti, pulmonary arterial hypertension patient and patient advocate, speaks about her experience with the condition and clinical trials, May 2024 Read Post »

The US Food and Drug Administration (FDA) issues guidance to medical product sponsors to ensure greater inclusivity in clinical trials, June 26, 2024

The U.S. Food and Drug Administration (FDA) has issued a draft guidance titled “Diversity Action Plans to Improve Enrollment of Participants from Underrepresented Populations in Clinical Studies.” This guidance is aimed at assisting medical product sponsors in submitting “Diversity Action Plans” for certain clinical studies. These plans are designed to enhance the enrollment of historically

The US Food and Drug Administration (FDA) issues guidance to medical product sponsors to ensure greater inclusivity in clinical trials, June 26, 2024 Read Post »

Award-winning singer, songwriter and speaker Chloe Temtchine, who is a former pulmonary hypertension patient and double lung transplant recipient, releases a new song dedicated to her donor

Chloe Temtchine is an award-winning singer, songwriter, speaker, and the creator of “Super Brave,” an interview series that features both kids and adults who are living with a chronic illness. Her dedication to the cause includes “The Chloe Temtchine Foundation” (TCTF) which supports those living with pulmonary arterial hypertension and other serious conditions. Through TCTF,

Award-winning singer, songwriter and speaker Chloe Temtchine, who is a former pulmonary hypertension patient and double lung transplant recipient, releases a new song dedicated to her donor Read Post »

The recording of PHA Europe’s first Health Technology Assessment (HTA) training webinars now available on the Bel Air Center online platform

PHA Europe, the European Pulmonary Hypertension Association, is offering training courses on Health Technology Assessment. (HTA) and Policy work. The first training session took place on June the 5th, 2024, and two more are scheduled before the end of the year: The speaker, Niels Bertelsen, is (volunteer) past chair of the Health Technology Assessment International

The recording of PHA Europe’s first Health Technology Assessment (HTA) training webinars now available on the Bel Air Center online platform Read Post »

Dutch pulmonary hypertension expert Prof. Dr. Harm Jan Bogaard delves into the intricacies of the condition in a Spotify podcast for “De Internist”, May 21, 2024

Prof. Dr. Harm Jan Bogaard, pulmonologist and Professor of Experimental Pulmonary Medicine from the Amsterdam UMC deconstructs the underlying mechanisms, risk factors, and symptoms of pulmonary hypertension, as well as shedding light on its diagnosis and management strategies, in a Spotify podcast for De Internist. One hour listening time, well worth it! Tune in at

Dutch pulmonary hypertension expert Prof. Dr. Harm Jan Bogaard delves into the intricacies of the condition in a Spotify podcast for “De Internist”, May 21, 2024 Read Post »

Kick-off meeting of the EU Joint Action JARDIN on the integration of European Reference Networks (ERNs) into national health systems 

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. 24 ERNs are working on a range of thematic issues, including ERN-Lung, the European Reference Center for Rare Lung Diseases, which

Kick-off meeting of the EU Joint Action JARDIN on the integration of European Reference Networks (ERNs) into national health systems  Read Post »

Excellent educational resources about remote care and use of digital tools by the European Lung Foundation

The European Lung Foundation educational resources about remote care and the use of digital tools include text and videos covering: 🔹 Video calls for consultations🔹 Sharing photos or videos🔹 Virtual wards and home monitoring🔹 Online rehabilitation and activity sessions🔹 Online diaries, journals or questionnaires🔹 Online questionnaires🔹 Wearable devices🔹 Health apps🔹 Benefits of digital healthcare technologies

Excellent educational resources about remote care and use of digital tools by the European Lung Foundation Read Post »

New cartoon video about pulmonary hypertension by the Italian Pulmonary Hypertension Association AMIP OdV, January 2024

Vittorio Vivenzio, President of the Italian Pulmonary Hypertension Association AMIP ODV, has released a new educational video on the association’s social media platforms. The video offers an easily comprehensible and “light” approach to understanding the intricate mechanisms behind the condition and the challenges of obtaining a timely and accurate diagnosis. It underscores the significance of

New cartoon video about pulmonary hypertension by the Italian Pulmonary Hypertension Association AMIP OdV, January 2024 Read Post »

“Take 2 – the new Me after a transplant”, a educational campaign promoted by the European Society for Organ Transplant (ESOT)

In the past few months, the European Society for Organ Transplant (ESOT) channels have been running a campaign called “Take 2 – the new Me after a transplant”. The campaign seeks to empower patients by offering them valuable and reliable information and resources that can enhance their pre and post-transplant journey and raise public attention

“Take 2 – the new Me after a transplant”, a educational campaign promoted by the European Society for Organ Transplant (ESOT) Read Post »

All the presentations from the Pulmonary Hypertension Association UK’s gathering are online. Topics include nutrition, physical activity and exercise, treatments and tests, echocardiograms and implantable devices, December 26, 2023

The Pulmonary Hypertension Association UK held its first ever ‘Together’ event in October 2023 in partnership with the Sheffield Pulmonary Vascular Disease Unit. Expert talks covered topics including treatments, research, nutrition, and physical activity, with a focus on empowering patients and their loved ones through developing knowledge and understanding. Here are the links to the

All the presentations from the Pulmonary Hypertension Association UK’s gathering are online. Topics include nutrition, physical activity and exercise, treatments and tests, echocardiograms and implantable devices, December 26, 2023 Read Post »

The Pulmonary Hypertension Association UK shares video interviews about sotatercept with experts at the Royal Papworth Hospital UK and the association’s Chairman

There is a lot of discussion and excitement at the present moment in the pulmonary hypertension community in the anticipation of the approval of sotatercept. The Pulmonary Hypertension Association UK has published some very insightful conversations with two leading specialists, Dr. Joe Newman, Clinical Research Fellow at the Royal Papworth Hospital, and Dr. Mark Toshner, Consultant

The Pulmonary Hypertension Association UK shares video interviews about sotatercept with experts at the Royal Papworth Hospital UK and the association’s Chairman Read Post »

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 »

“Introduction to Exercise”, a video series by the Pulmonary Hypertension Association (PHA), September 16, 2023

PHA’s “Introduction to Exercise” video series offers five videos and printable resources on the benefits of exercise and pulmonary rehabilitation programs, as well as yoga, strength training and cardio exercise instruction. The five videos cover the following topics IMPORTANT! The PHA specifies that patients must consult their pulmonary hypertension care team before starting to exercise!

“Introduction to Exercise”, a video series by the Pulmonary Hypertension Association (PHA), September 16, 2023 Read Post »

Announcing our next webinar on “Balancing life and health: Pulmonary Hypertension, women and family planning”, September 5, 2023 at 18:00 CEST

Pregnancy in pulmonary hypertension is a very sensitive and multifaceted topic. Beyond medical considerations, cultural, religious, and personal beliefs play pivotal roles, adding layers of complexity to the decision-making process. Navigating this delicate journey requires a comprehensive understanding of each individual’s unique circumstances and values. Panelists Karen M. Olsson MD – Department of Respiratory Medicine,

Announcing our next webinar on “Balancing life and health: Pulmonary Hypertension, women and family planning”, September 5, 2023 at 18:00 CEST Read Post »

Seven-part informational video series on treating and managing pulmonary hypertension published by the Pulmonary Hypertension Association (PHA), July 27, 2023

The Pulmonary Hypertension Association (PHA) has just share its latest series of informational videos on treating and managing pulmonary hypertension, featuring J. Wesley McConnell, M.D., director of the Norton Healthcare Pulmonary Hypertension Clinic in Louisville, Kentucky. In this seven-part video series, Dr. McConnell provides an overview of managing a PH diagnosis and the various treatment

Seven-part informational video series on treating and managing pulmonary hypertension published by the Pulmonary Hypertension Association (PHA), July 27, 2023 Read Post »

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