Unraveling the genetics of pulmonary hypertension webinar

“Unraveling the Genetics of Pulmonary Hypertension” explored the genetic underpinnings of this complex disease. Our panel of experts, including a patient, explored the latest research, information on genetic mutations associated with pulmonary hypertension, and practical guidance on genetic counseling and testing. Speakers Prof David Montani, Department of Respiratory and Intensive Care Medicine, Pulmonary Hypertension National […]

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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 »

“Fundamentals of Genetic Testing”, a live webinar organised by the Pulmonary Hypertension Association (PHA) in collaboration with with partners TBX4life and Fundación Contra la Hipertensión Pulmonar, June 11, 2024

The Pulmonary Hypertension Association (PHA) is holding a webinar of “Fundamentals of Genetic Testing“ on Tuesday, June 11, at 2 p.m. EDT/ 6 p.m. UTC in collaboration with TBX4Life and Fundación Contra la Hipertensión Pulmonar Featured topics include The webinar will be available in English and Spanish. Speakers Harm Jan Bogaard, MD, PhDProfessor of Experimental Pulmonary MedicinePulmonologist, Department

“Fundamentals of Genetic Testing”, a live webinar organised by the Pulmonary Hypertension Association (PHA) in collaboration with with partners TBX4life and Fundación Contra la Hipertensión Pulmonar, June 11, 2024 Read Post »

The Canadian Pulmonary Hypertension Association, PHA Canada, publishes results of its survey on socio-economic burden of pulmonary hypertension

Last year the Canadian Pulmonary Hypertension Association, PHA Canada, conducted a survey to explore the financial and employment impacts of pulmonary arterial hypertension in Canada. The aim of the research was to understand how this condition affects patients’ work and daily activities. The survey also captured information about patients’ need for caregivers and the impact

The Canadian Pulmonary Hypertension Association, PHA Canada, publishes results of its survey on socio-economic burden of pulmonary hypertension Read Post »

Pulmonary hypertension “Question time” organised by the European Lung Foundation Pulmonary Hypertension Patient Advisory Group, May 31, 2024

Coming up on May 31st at 10 am CEST and not to be missed if you are part of the pulmonary hypertension community! The European Lung Foundation (ELF) Pulmonary Hypertension Patient Advisory Group was set up in 2023 and includes patients and patient advocates from a number of patient associations in Europe and in the

Pulmonary hypertension “Question time” organised by the European Lung Foundation Pulmonary Hypertension Patient Advisory Group, May 31, 2024 Read Post »

PHA Europe celebrates World Pulmonary Hypertension Day 2024 with a webinar on non pulmonary arterial hypertension forms of pulmonary hypertension

PHA Europe, the European Pulmonary Hypertension Association, is celebrating this year’s World Pulmonary Hypertension Day with a webinar on non pulmonary arterial hypertension forms of pulmonary hypertension, featuring world renowned expert expert Ardeschir Ghofrani as keynote speaker.  May 5, 2024 – 16:00 CET Link: https://belaircenter.info/

PHA Europe celebrates World Pulmonary Hypertension Day 2024 with a webinar on non pulmonary arterial hypertension forms of pulmonary hypertension Read Post »

April 28 is ESOT, European Society for Organ Transplantation, Action Day, an annual observance which calls for enhanced cooperation between EU member states to address inequalities in transplantation

April 28 is ESOT – European Society for Organ Transplantation Action Day. ESOT is calling for enhanced cooperation among EU member states to empower transplant centres in delivering consistent, high-quality transplantation service ahead of the EU elections. ESOT is looking to drive the following 5 actions in the European Parliament between 2024 and 2029: Read

April 28 is ESOT, European Society for Organ Transplantation, Action Day, an annual observance which calls for enhanced cooperation between EU member states to address inequalities in transplantation Read Post »

Findings from the UK Pulmonary Hypertension Association’s survey on nutrition and pulmonary arterial hypertension now available

The UK Pulmonary Hypertension Association launched a survey on nutrition and pulmonary arterial hypertension last year in March in which they asked patients about eating habits, food preferences, and cooking or weight management challenges. The findings were announced at the Pulmonary Vascular Research Institute (PVRI)’s congress in January 2024 and, more recently, on social media.

Findings from the UK Pulmonary Hypertension Association’s survey on nutrition and pulmonary arterial hypertension now available Read Post »

Navigating sex and intimacy while living with pulmonary hypertension, a live webinar organised by the Pulmonary Hypertension Association of Canada (PHA Canada), April 29, 20:00 CET

Drs. Vargas and Ventetuolo will discuss sexual health and intimacy for individuals living with pulmonary hypertension and their partners in this PHA Canada live webinar on April 29, 2024. They will explore prior research, clinical observations, and insights gathered from their own interviews and surveys with pulmonary hypertension patients. This webinar aims to shed light

Navigating sex and intimacy while living with pulmonary hypertension, a live webinar organised by the Pulmonary Hypertension Association of Canada (PHA Canada), April 29, 20:00 CET Read Post »

Full transcripts of the Alliance for Pulmonary Hypertension’s 2023 webinars now available for in a format that can be translated into 40 languages

The full transcripts of the Alliance for Pulmonary Hypertension’s 2023 six webinars are now available! The transcripts encapsulate invaluable insights that continue to resonate with current trends and emerging issues, serving as a vital resource for our community. They are now in a format that can be translated into 40 languages, thanks to the embedded

Full transcripts of the Alliance for Pulmonary Hypertension’s 2023 webinars now available for in a format that can be translated into 40 languages Read Post »

“Patient Involvement in Guidelines”, a webinar organised by ERKNet and EURORDIS, featuring Matt Bolz-Johnson as speaker, April 22, 2024

Clinical practice guidelines provide essential recommendations for diagnosing and treating medical conditions. In the realm of pulmonary hypertension a groundbreaking milestone has been achieved with the inclusion of two patient representatives, Pisana Ferrari and Gergely Meszaros JD, MSc, as members of the dedicated task force and co-authors of the new guidelines jointly developed by the European Society of Cardiology and the European Respiratory

“Patient Involvement in Guidelines”, a webinar organised by ERKNet and EURORDIS, featuring Matt Bolz-Johnson as speaker, April 22, 2024 Read Post »

Multinational real-world survey offers insights into key factors in delays to diagnosis for pulmonary arterial hypertension patients, Therapeutic Advances in Respiratory Disease, February 2024

Delays to diagnosis in pulmonary arterial hypertension still persist today, despite the substantial progress made in the field. This ongoing issue continues to pose a significant challenge, highlighting the need for continued efforts to improve early detection and intervention strategies. Delays in diagnosis not only prolong patient suffering but also lead to missed opportunities for

Multinational real-world survey offers insights into key factors in delays to diagnosis for pulmonary arterial hypertension patients, Therapeutic Advances in Respiratory Disease, February 2024 Read Post »

Live webinar on new therapies by the US Pulmonary Hypertension Association’s, Feb. 21, at 2 p.m. EST

A this PHA live webinar speakers Sandeep Sahay, and Vallerie V. McLaughlin discussed hopeful discoveries from late-stage clinical trials and the differences between current symptom management practices and new disease-modifying therapeutics. The webinar will be moderated by PHA’s Elizabeth Joseloff. This webinar covered the following topics: • The differences between the current symptom management practices

Live webinar on new therapies by the US Pulmonary Hypertension Association’s, Feb. 21, at 2 p.m. EST Read Post »

Latest survey by the UK Pulmonary Hypertension Association, PHA UK, reveals persistent challenges faced by patients, notably in receiving a diagnosis

The findings from the Pulmonary Hypertension Association UK‘s latest major survey, presented at the recent Pulmonary Vascular Research Institute (PVRI) conference in London, underscore the persistent challenges faced by pulmonary hypertension patients in receiving a diagnoses. Time to diagnosis remains a critical issue, with over half of the respondents reporting it took more than a year to receive

Latest survey by the UK Pulmonary Hypertension Association, PHA UK, reveals persistent challenges faced by patients, notably in receiving a diagnosis Read Post »

New webinar series on pulmonary hypertension in French by Belgian associations VZW and HTAP Belgique in collaboration with renowned expert Prof. Jean-Luc Vachéry

Important news for French-speaking pulmonary hypertension patients in Belgium and, indeed, in the rest of the world! PH Belgium – Pulmonale Hypertensie vzw, in collaboration with HTAP Belgique and Prof. Dr. Jean-Luc Vachiery is organising a series of webinars in French addressing a wide range of topics related to pulmonary hypertension including R&D, multidisciplinary care, the role of nurses in the coordination

New webinar series on pulmonary hypertension in French by Belgian associations VZW and HTAP Belgique in collaboration with renowned expert Prof. Jean-Luc Vachéry Read Post »

“Discovering New Pulmonary Hypertension Therapies on the Horizon”, a live webinar on February 21, 2024, organised by the US Pulmonary Hypertension Association, PHA

Join the Pulmonary Hypertension Association, PHA, for the upcoming “Discovering New Pulmonary Hypertension Therapies on the Horizon” PHA Live webinar on Wednesday, Feb. 21 at 2 pm. EST/ 7 p.m. UTC. During the webinar, Sandeep Sahay, MD, MSc, ATSF, will review: Don’t miss this opportunity to gain insights into these promising therapies that will help manage your

“Discovering New Pulmonary Hypertension Therapies on the Horizon”, a live webinar on February 21, 2024, organised by the US Pulmonary Hypertension Association, PHA Read Post »

Embark on a journey to discover the history of the pulmonary hypertension association movement by revisiting the AfPH’s recent webinar

This Alliance for Pulmonary Hypertension webinar marks the sixth installment in a series dedicated to delving into the groundbreaking innovations outlined in the 2022 ESC/ERS clinical guidelines for diagnosing and treating pulmonary hypertension. One particularly notable advancement is the inclusion in the guidelines, for the first time, of a new section focusing on ‘Patient Associations and

Embark on a journey to discover the history of the pulmonary hypertension association movement by revisiting the AfPH’s recent webinar Read Post »

The French Pulmonary Hypertension Association, HTaPFrance, invited to bring the French experience to a conference of the Algerian Pulmonary Hypertension Association, HTAP Algérie

Maggy Surace, President of the French Pulmonary Hypertension Association HTaPFrance, and Mélanie Gallant Dewavrin, Director of HTaPFrance, have been invited to participate remotely in the 5th Pulmonary Hypertension Awareness Day organised by the Algerian Pulmonary Hypertension Association, HTAP Algérie. The event is taking place at the Hotel Sheraton, Algiers, on Saturday, the 6th of January.

The French Pulmonary Hypertension Association, HTaPFrance, invited to bring the French experience to a conference of the Algerian Pulmonary Hypertension Association, HTAP Algérie Read Post »

In a bustling year 2023, Pulmonale Hypertensie VZW, the Belgian Pulmonary Hypertension Association, made strides with patient meetings, research funding, expert training, and awareness efforts

This report was submitted by Wnedy , President of Pulmonale Hypertensie VZW, the Belgian Pulmonary Hypertension Association. Many thanks Wendy for sharing with the community! QUOTE 2023 was a pretty busy year for our association, it was all about getting together, informing our members and learning a lot ourselves. Here is an overview of our

In a bustling year 2023, Pulmonale Hypertensie VZW, the Belgian Pulmonary Hypertension Association, made strides with patient meetings, research funding, expert training, and awareness efforts Read Post »

Prof. Adam Torbicki explores access to care, Prof. Jean-Luc Vachiéry delves into drug development – watch the highlights from the PHA Europe Annual Conference online

Prof. Adam Torbicki’s presentation is titled “Access to care for pulmonary arterial hypertension and chronic thromboembolic pulmponary hypertension”. It can be viewed at this link on Vimeo (you need to register on Vimeo to see it) Prof. Jean-Luc Vachiéry’s presentation is titled “Drug development and clinical trials“. It can be viewed at this link on

Prof. Adam Torbicki explores access to care, Prof. Jean-Luc Vachiéry delves into drug development – watch the highlights from the PHA Europe Annual Conference online Read Post »

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