Recording of May 15, 2025 European Patients’ Forum webinar on understanding patients’ rights in the European Health Data Space (EHDS) now available

On 15 May 2025, the European Patient Forum (EPF) hosted a webinar to inform patients, health professionals, researchers, and other stakeholders about the key aspects of the European Health Data Space (EHDS). The webinar focused on patients’ rights and the practical changes the regulation introduces. The recording is now available at this link Photo credit: […]

Recording of May 15, 2025 European Patients’ Forum webinar on understanding patients’ rights in the European Health Data Space (EHDS) now available Read Post »

The Alliance for Pulmonary Hypertension Joins European Patients’ Forum (EPF) to Help Shape the Future of Patient Advocacy in Europe

Introduction The European Patients’ Forum (EPF) is a leading umbrella organisation that represents the collective interests of patient organisations across Europe. With a strong focus on equity, patient-centred care, and meaningful involvement in health policy and systems, the European Patients’ Forum brings together diverse patient voices to influence European health debates and decision-making. The organisation

The Alliance for Pulmonary Hypertension Joins European Patients’ Forum (EPF) to Help Shape the Future of Patient Advocacy in Europe Read Post »

US Food and Drug Administration approves YUTREPIA, a treprostinil inhalation powder for pulmonary arterial hypertension and pulmonary hypertension associated with interstitial lung disease

Yutrepia is a dry powder formulation of treprostinil, a prostacyclin analog. It is designed to enhance deep-lung delivery with an easy-to-use device requiring low inspiratory effort. Yutrepia was was tentatively approved by the Food and Drug Administration last year (see our article here), but the agency was waiting for regulatory exclusivity of a competing product

US Food and Drug Administration approves YUTREPIA, a treprostinil inhalation powder for pulmonary arterial hypertension and pulmonary hypertension associated with interstitial lung disease Read Post »

Mental Health Awareness Week in the UK (12-18 May): Discover Support Resources from the UK Pulmonary Hypertension Association for Patients and Families

This week (12th-18th May) is Mental Health Awareness Week in the UK. Over the years the UK pulmonary hypertension association, PHA UK, has built up a range of services and resources to help patients that are struggling with anxiety, depression, or general mental wellbeing, you can find all the details at here.

Mental Health Awareness Week in the UK (12-18 May): Discover Support Resources from the UK Pulmonary Hypertension Association for Patients and Families Read Post »

“Global Voices, One Mission: Amplify the Beat” – our motto for the 2025 edition of World Pulmonary Hypertension Day, May 5

Since its inception in 2012, World Pulmonary Hypertension Day (May 5th) has evolved into a powerful global movement uniting patients, caregivers, healthcare professionals, and advocates across continents. What began as a coordinated effort to raise awareness about this rare and serious condition has grown into an international platform for education, advocacy, and community building. World

“Global Voices, One Mission: Amplify the Beat” – our motto for the 2025 edition of World Pulmonary Hypertension Day, May 5 Read Post »

“A wake-up call: key trends and policy asks for cardiovascular health in women”, European Parliament event, March 5, 2025

We were unfortunately unable to attend the European Parliament event which took place on March 5, 2025, but have read the minutes with great interest. Based on these we have put together some key takeaways as this topic is very relevant to pulmonary arterial hypertension patients, who are predominantly women. Opening Member of the European

“A wake-up call: key trends and policy asks for cardiovascular health in women”, European Parliament event, March 5, 2025 Read Post »

Latest edition on “Mariposa” the quarterly magazine of the European PH organisation PHA Europe, is now out covering the annual conference, World PH Day and much more

In the Editor’s Note to “Mariposa” Hall Skaara, project manager at PHA Europe, highlights the organisation’s key 2024 achievements: Download the full issue of the magazine at this link on the PHA Europe website

Latest edition on “Mariposa” the quarterly magazine of the European PH organisation PHA Europe, is now out covering the annual conference, World PH Day and much more Read Post »

The US Food and Drug Administration (FDA) has accepted the new drug application resubmission for YUTREPIA™ (treprostinil) inhalation powder, March 28, 2025

Link: Liquidia Corporation announced on March 28, 2025, that the US Food and Drug Administration has accepted its resubmitted new drug application for YUTREPIA (treprostinil) inhalation powder. The treatment targets pulmonary arterial hypertension (PAH) and pulmonary hypertension associated with interstitial lung disease (PH-ILD). The FDA had previously granted tentative approval for both indications (see our

The US Food and Drug Administration (FDA) has accepted the new drug application resubmission for YUTREPIA™ (treprostinil) inhalation powder, March 28, 2025 Read Post »

The first edition of the year of the UK’s Pulmonary Hypertension’s EMPHASIS magazine is now out

EMPHASIS is the quarterly magazine of the UK Pulmonary Hypertension Association, PHA UK. You can read it at this link on the PHA UK website. This edition contains news of patient meetings, an update on sotatercept and an analysis of the future of research, a number of patient stories, an article on self identity and

The first edition of the year of the UK’s Pulmonary Hypertension’s EMPHASIS magazine is now out Read Post »

March is Nutrition Month in the US, here are some tips from the US Pulmonary Hypertension Association, PHA

March is National Nutrition Month in the US, and the Pulmonary Hypertension Association has shared a LinkedIn post highlighting nutrition awareness for pulmonary hypertension patients. The organization encourages patients to be especially mindful of their dietary choices, as certain foods and vitamins can adversely interact with pulmonary hypertension medications, worsen edema (fluid retention), or exacerbate

March is Nutrition Month in the US, here are some tips from the US Pulmonary Hypertension Association, PHA Read Post »

Latest edition of “Pathlight”, the US Pulmonary Hypertension Association’s quarterly magazine, now out!

The latest issue of the quarterly Pathlight magazine of the US Pulmonary Hypertension Association, the PHA, celebrates pulmonary hypertension heroes. As National Volunteer Month approaches, the association acknowledges the people who make this organization a success. This issue also includes articles about imaging innovations, managing medication side effects and swimming with subcutaneous therapy.  To receive

Latest edition of “Pathlight”, the US Pulmonary Hypertension Association’s quarterly magazine, now out! Read Post »

Diagnostic Delays and Quality of Life in Japanese Patients with Pulmonary Hypertension: A Nationwide Survey, Pulmonary Therapy, March 18, 2025

A study published on March 18 2025 in Pulmonary Therapy provides a comprehensive view of pulmonary hypertension in Japan through a nationwide survey of 160 patients (119 with pulmonary arterial hypertension (PAH) and 41 with chronic thromboembolic pulmonary hypertension (CTEPH) and 211 physicians. We are particularly pleased to publish this article as one of the

Diagnostic Delays and Quality of Life in Japanese Patients with Pulmonary Hypertension: A Nationwide Survey, Pulmonary Therapy, March 18, 2025 Read Post »

Jimmy Ford MD discusses the work of the “Patient Perspectives” Taks force at the 7th World Symposium on Pulmonary Hypertension in a podcast for phaware Global Association

Jimmy Ford, MD discusses the 7th World Symposium on Pulmonary Hypertension and his work on the “Patient Perspectives” Task Force, check out the PHAWARE GLOBAL ASSOCIATION podcast, episode 512 at this link The “Patient Perspectives” Task Force was composed of four patient representatives, three of which are patients (Pisana Ferrari, Italy; Hall Skaara, Norway, and

Jimmy Ford MD discusses the work of the “Patient Perspectives” Taks force at the 7th World Symposium on Pulmonary Hypertension in a podcast for phaware Global Association Read Post »

The latest National Audit of Pulmonary Hypertension in the United Kingdom shows high levels of care despite increasing number of patients

Every year, the National Audit of Pulmonary Hypertension (NAPH) measures the quality of care provided to pulmonary hypertension patients in the United Kingdom by asking specialist centres to provide data that is then compared against a set of 15 agreed standards. The latest audit, covering 2023-24, shows that high levels of care continue – despite centres seeing

The latest National Audit of Pulmonary Hypertension in the United Kingdom shows high levels of care despite increasing number of patients Read Post »

A proposal to involve people living with rare and complex conditions in the development of clinical practice guidelines, Patient Education and Counseling, February 19, 2025

The objective of the study published on February 19, 2025 as a Journal pre proof on Patient Edcuation and Counseling (§), is to develop a proposal to involve people living with rare and complex conditions in the development of clinical practice guidelines, based on a systematic review of qualitative literature (64 publications). The authors offer

A proposal to involve people living with rare and complex conditions in the development of clinical practice guidelines, Patient Education and Counseling, February 19, 2025 Read Post »

Medication Non-Adherence in Patients with Pulmonary Arterial Hypertension: The Pulmonary Hypertension Association (PHA) Registry (PHAR), Annals of the American Thoracic Society, February 18, 2025

Medication non-adherence in pulmonary arterial hypertension (PAH) can significantly impact patient outcomes, yet its prevalence and consequences remain understudied. This multi-center registry analysis examined self-reported non-adherence rates among pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension (CTEPH) patients, identifying key socioeconomic predictors and associated healthcare outcomes. Using data from the Pulmonary Hypertension Association Registry (PHAR),

Medication Non-Adherence in Patients with Pulmonary Arterial Hypertension: The Pulmonary Hypertension Association (PHA) Registry (PHAR), Annals of the American Thoracic Society, February 18, 2025 Read Post »

The European Pulmonary Hypertension Association, PHA Europe, launches new 2025 awareness campaign, titled “Without you there would be no Us”

The new campaign by PHA Europe “Without You There Would Be No Us” celebrates 25 years of progress in pulmonary hypertension care by honouring the contributions of health care providers, medical teams, researchers, associations, individuals, pharmaceutical companies. Through inspiring stories and gratitude, it aims to raise awareness, strengthen sponsor relationship, attract new partnerships, and highlight

The European Pulmonary Hypertension Association, PHA Europe, launches new 2025 awareness campaign, titled “Without you there would be no Us” Read Post »

The Alliance for Pulmonary Hypertension live webinars are back, in a new format, starting March 26, 2025. Applications for speakers or discussion topics are open!

In 2023-24, the Alliance for Pulmonary Hypertension organized 14 successful live webinars that brought together leading experts to discuss key topics in pulmonary hypertension management, research, and patient support. The series featured speakers from 20 countries across five continents, including 24 scientific experts, 13 patients and patient advocates, and two patient engagement specialists who moderated

The Alliance for Pulmonary Hypertension live webinars are back, in a new format, starting March 26, 2025. Applications for speakers or discussion topics are open! Read Post »

The Dutch Pulmonary Hypertension Association has contributed financially to the RECOMPENSE Phase 4 study on sotatercept conducted by the Amsterdam University Medical Center

The Dutch Pulmonary Hypertension Association, Stichting Pulmonale Hypertensie, has contributed financially with an amount of € 40.000 the RECOMPENSE – Right VEntricular COMPENsation with SotatercEpt – Phase 4 study conducted by the Amsterdam UMC. This research aims to investigate sotatercept’s effects on right ventricular function. Background Several large international studies have already been conducted in

The Dutch Pulmonary Hypertension Association has contributed financially to the RECOMPENSE Phase 4 study on sotatercept conducted by the Amsterdam University Medical Center Read Post »

Date announced for the 2025 edition of the French pulmonary hypertension association HTaPFrance’s Children and Family Weekend, May 29-31, 2025

The French pulmonary hypertension association HTaPFrance has announced the date for its yearly WEEF, Children and Family Weekend, May 29-31, 2025, at the CIS Lamourelle in Carcassonne The Children’s and Family Weekend is an opportunity to: – Meet other children/young people and other families – Better understand what pulmonary arterial hypertension is and to live

Date announced for the 2025 edition of the French pulmonary hypertension association HTaPFrance’s Children and Family Weekend, May 29-31, 2025 Read Post »

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