“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 »

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 »

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 »

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 »

Wrapping up a successful year of pulmonary hypertension knowledge-sharing educational live web events!

The Alliance for Pulmonary Hypertension has just held the last webinar of the six-part series it launched in June 2023 exploring the innovations outlined in the 2022 joint clinical guidelines on pulmonary hypertension by the European Society of Cardiology (ESC) and the European Respiratory Society (ERS). Across these six insightful sessions, we delved into pivotal

Wrapping up a successful year of pulmonary hypertension knowledge-sharing educational live web events! Read Post »

A report of the Dutch Pulmonary Hypertension Association’s very successful “Information Day”, held on November 11, 2023, on the theme: “20 Years Moving Forward”

On the 11th of November the Dutch Pulmonary Hypertension Association held a remarkably successful Information Day on pulmonary hypertension, with the central theme being “20 years moving forward.” The auditorium was filled to the last seat, with 160 participants. The day started with the opening remarks by the Chair, Ms Miriam Kap, a nurse specialist

A report of the Dutch Pulmonary Hypertension Association’s very successful “Information Day”, held on November 11, 2023, on the theme: “20 Years Moving Forward” Read Post »

Slides and recording of webinar n° 3 on the innovations in the 2022 pulmonary hypertension treatment algorithm

Attendees at our October 12 webinar had the invaluable opportunity to gain firsthand insights from two global authorities in the field of pulmonary hypertension. These distinguished experts, both co-authors of the 2022 European Society of Cardiology and European Respiratory Society clinical guidelines on pulmonary hypertension, shed light on the updated treatment algorithm outlined in the guidelines.

Slides and recording of webinar n° 3 on the innovations in the 2022 pulmonary hypertension treatment algorithm Read Post »

Celebrating the 12 year anniversary of the Latvian Pulmonary Hypertension Association, Pulmonālās Hipertensijas Biedrība (PHB), and its amazing achievements!

Our warmest congratulations to our friend and colleague Ieva Plume, President of PHA Latvia, Pulmonālās hipertensijas biedrība (PHB), one of the Founding Members of the Alliance for Pulmonary Hypertension, for their 12th anniversary! Twelve years of amazing achievements! Message sent by Ieva Plume “On August 4, 2023, the Latvian Pulmonary Hypertension Association (PHB) celebrated its

Celebrating the 12 year anniversary of the Latvian Pulmonary Hypertension Association, Pulmonālās Hipertensijas Biedrība (PHB), and its amazing achievements! 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 »

Slides and recording of our webinar on “Patients as Partners and Shared Decision Making” -June 6, 2023

Download the webinar slides here Learning objectives of the webinar Our goal is to empower individuals living with pulmonary hypertension and their families, equipping them with actionable insights and practical knowledge. Transcript ARADIGM FOR PULMONARY HYPERTENSION CARE”, June 6, 2023 NB. This transcript can be translated into your preferred language – use orange button at

Slides and recording of our webinar on “Patients as Partners and Shared Decision Making” -June 6, 2023 Read Post »

Caring for a child with Paediatric Pulmonary Hypertension, recording of the live webinar organised by the Pulmonary Hypertension Association (PHA) on June 22 now available

The recording of the webinar organised by the Pulmonary Hypertension Association (PHA) on June 22, 2023 is now available at this link on the PHA YouTube channel. The webinar featured Pediatric Pulmonary Hypertension experts, Rachel Sullivan, M.D., and Melissa Magness, M.S.N., APRN, CNP-AC and parents, Jayna Wall and Jeff Harpp. The panel shared an overview

Caring for a child with Paediatric Pulmonary Hypertension, recording of the live webinar organised by the Pulmonary Hypertension Association (PHA) on June 22 now available Read Post »

The AfPH webinar on “Patient reported Outcome Measures in Pulmonary Hypertension Research and Care”, July 27, 2023

The AfPH’s second webinar in the six part series exploring the innovations introduced by the 2022 ESC/ERS clinical guidelines on pulmonary hypertension was held on July 27. Patient-Reported Outcome Measures (PROMs) are currently underused in the context of pulmonary hypertension. While their importance in capturing the patient perspective and improving patient care is well recognized,

The AfPH webinar on “Patient reported Outcome Measures in Pulmonary Hypertension Research and Care”, July 27, 2023 Read Post »

Full transcript of the June 6, 2023 AfPH webinar of “Partnering with Patients and Shared Decision Making: A New Paradigm in Pulmonary Hypertension Care?” now available

“PARTNERING WITH PATIENTS AND SHARED DECISION MAKING: A NEW PARADIGM FOR PULMONARY HYPERTENSION CARE”, June 6, 2023 You can also download the slides, recording and text of transcript in pdf format in several languages at this link on the PH-KSP. TRANSCRIPT DISCLAIMER: Despite every effort to ensure the accuracy of this transcript, we strongly encourage

Full transcript of the June 6, 2023 AfPH webinar of “Partnering with Patients and Shared Decision Making: A New Paradigm in Pulmonary Hypertension Care?” now available Read Post »

Gathering Strength and Expertise: HTaPFrance’s Annual Meeting Unites Patients, Families, and Scientific Experts on June 10th

This year the HTaPFrance’s Annual General Assembly was held on the 10th of June via video conference, bringing together approximately 45 people. he association operates thanks to two employees and of course volunteers who dedicated 1 093 hours of volunteer work in 2022. These volunteer hours are valued in the accounts and represent €12,339, or 0.7 full-time equivalent. HTaPFrance keeps track of volunteer hours, because

Gathering Strength and Expertise: HTaPFrance’s Annual Meeting Unites Patients, Families, and Scientific Experts on June 10th Read Post »

The Afph’s first webinar on “Partnering with patients and shared decision making in PH care”, June 6 2023

We are delighted that around 50 people attended our webinar live across all 3 platforms (LInkedIn, Facebook and YouTube) and that the event has received 100s of views in the following days. We had good engagement from the audience and we are looking forward to the next event! We take the occasion to warmly thank

The Afph’s first webinar on “Partnering with patients and shared decision making in PH care”, June 6 2023 Read Post »

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