The Alliance for Pulmonary Hypertension supports Cure HHT’s efforts to direct future research for people with pulmonary arterial hypertension and hereditary hemorrhagic telangiectasia (HHT)

Renamed “Cure HHT” in 2014, the HHT Foundation International was founded by a passionate group of patient families and physicians, who shared a hope for a better future for those with hereditary hemorrhagic telangiectasia (HHT). Since its establishment in 1991, Cure HHT has consistently been at the center of the national (US) and global effort […]

The Alliance for Pulmonary Hypertension supports Cure HHT’s efforts to direct future research for people with pulmonary arterial hypertension and hereditary hemorrhagic telangiectasia (HHT) Read Post »

Training pulmonary hypertension patients to become “experts” and advocates: a great initiative by the Belgian pulmonary hypertension association Pulmonale Hypertonie vzw

In today’s healthcare landscape, the patient’s perspective holds increasing sway in pivotal decision-making processes across various sectors, including governmental agencies, healthcare institutions, insurance entities, and corporate entities. As the importance of incorporating patient feedback grows, initiatives aimed at equipping patients with a deeper understanding of these processes and objectives become paramount. Recognizing this need the

Training pulmonary hypertension patients to become “experts” and advocates: a great initiative by the Belgian pulmonary hypertension association Pulmonale Hypertonie vzw Read Post »

On Rare Disease Day 2024 “Pongo”, the mascot of the Greek Pulmonary Hypertension Association, visited schools in Loutraki to tell children about pulmonary hypertension

“Pongo” serves as the mascot of the Greek Pulmonary Hypertension Association. This elephant doll features a unique characteristic: a minuscule nostril that impedes its ability to breathe adequately, leading to its striking purple hue caused by oxygen deprivation. It was create to educate children to recognize a physical diversity that may not always be visible.

On Rare Disease Day 2024 “Pongo”, the mascot of the Greek Pulmonary Hypertension Association, visited schools in Loutraki to tell children about pulmonary hypertension Read Post »

Launched today, Rare Disease Day 2024, the PHA Europe “BEL AIR” virtual conference center for pulmonary hypertension

The BEL AIR CENTER is a virtual conference center, divided into several “rooms” where visitors can find and view presentations from leading pulmonary hypertension experts and from PHA Europe’s industry partners, patient association information booths, an art gallery with works by patients and health care professionals, and a networking café. Prof. Marc Humbert, Director of

Launched today, Rare Disease Day 2024, the PHA Europe “BEL AIR” virtual conference center for pulmonary hypertension 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 »

A guide to intimacy for pulmonary hypertension patients published the US Pulmonary Hypertension Association, PHA

This guide has been created for adult members of the pulmonary hypertension community interested in or engaged in physically intimate and/or sexual activity. The guide addresses, inter alia, some common “myths” about sex in pulmonary hypertension, eg. that if you are a patient you are not sexual or desirable, that there are more important things

A guide to intimacy for pulmonary hypertension patients published the US Pulmonary Hypertension Association, PHA 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 »

“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 »

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 »

New! The Pulmonary Hypertension Association (PHA) launches Facebook page for pulmonary hypertension patients having undergone a lung transplant or preparing to receive one

If you have undergone a lung or heart transplant, or are you considering or preparing to receive a transplant, consider join the Pulmonary Hypertension Association USA (PHA)’s new “Transplant for Pulmonary Hypertension” Facebook Group, to connect with others who have received a transplant or are in the transplantation process. Sign up at this link on

New! The Pulmonary Hypertension Association (PHA) launches Facebook page for pulmonary hypertension patients having undergone a lung transplant or preparing to receive one Read Post »

Team PHenomenal Hope’s 2024 Research Award rewards novel concepts in pulmonary hypertension with transformative potential – submit your Letters of Intent by March 2024

The Team PHenomenal Hope Award Program rewards studies of novel concepts in pulmonary hypertension with a potential to transform the field. The award is not limited to any pulmonary hypertension groups, pediatrics, or adult studies. Eventual clinical applicability is expected. As such, this program will provide an opportunity for individuals to affect the quality of

Team PHenomenal Hope’s 2024 Research Award rewards novel concepts in pulmonary hypertension with transformative potential – submit your Letters of Intent by March 2024 Read Post »

The UK Pulmonary Hypertension Association, PHA UK, has a dedicated Facebook page for pulmonary hypertension caregivers

A great initiative by the Pulmonary Hypertension Association UK which recognizes the essential role caregivers play in pulmonary hypertension care and provides a supportive environment where they can connect, exchange experiences, and offer each other guidance. 👏 Sign up for at this link on the PHA UK Facebook page

The UK Pulmonary Hypertension Association, PHA UK, has a dedicated Facebook page for pulmonary hypertension caregivers 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 »

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 »

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