The US Pulmonary Hypertension Association, the PHA, celebrates its 35th anniversary this year, read more on the latest edition of its magazine Pathlight

As US Pulmonary Hypertension Association, celebrates its 35th anniversary this year, founders Judy and Ed Simpson reflect on the organization’s history in the latest issue of Pathlight magazine. Check out the timeline at this link The Pulmonary Hypertension Association (PHA) was founded in 1991 by three patients and a nurse in Florida, and has grown […]

The US Pulmonary Hypertension Association, the PHA, celebrates its 35th anniversary this year, read more on the latest edition of its magazine Pathlight Read Post »

New edition of the German pulmonary hypertension association ph e.v. magasine RUNDBRIEF, February 2026

Here is the AI translation of the index. Patient Community & Events Regional Association Updates (Landesverbände) Reports from local pulmonay hypertension chapters across Germany, covering Baden-Württemberg, Bavaria, Berlin/Brandenburg/Mecklenburg-Vorpommern, Hamburg/Schleswig-Holstein, Hesse, North Rhine-Westphalia, Saxony, and Saarland/Rhineland-Palatinate (pp. 16–33), plus a directory of regional leaders (p. 33). Medical & Scientific Topics Practical Patient Information Policy & Advocacy

New edition of the German pulmonary hypertension association ph e.v. magasine RUNDBRIEF, February 2026 Read Post »

The UK’s pulmonary hypertension association free resource of the month is a four week program to address depression

Developed by psychologists, and supported by the UK’s pulmonary hyeprtension association, PHA UK, this four-week programme consists of a series of workbooks based on Cognitive Behavioural Therapy (CBT), to help patients change their thinking habits and behaviours. Find our more at this link on the PHA UK website

The UK’s pulmonary hypertension association free resource of the month is a four week program to address depression Read Post »

“Making the most of remote appointments”, the UK Pulmonary Hypertension Association’s free information material of the month

The UK Pulmonary Hypertension Association’s free form has been designed to help patients prepare for remote medical appointments. Completing it it beforehand can help make the most of the visits. Download the form at this link on the PHA UK website

“Making the most of remote appointments”, the UK Pulmonary Hypertension Association’s free information material of the month Read Post »

The Pulmonary Hypertension Association of Canada: Patient Voices From Bench to Bedside and Beyond, Journal of Cardiac Failure, November 2025

The Pulmonary Hypertension Association of Canada, PHA Canada, has published an article reporting on the findings of a survey where they asked a small group of patients what they valued about having a right heart catheterization (RHC), and how they would like their care providers to share the information. The article is not open access

The Pulmonary Hypertension Association of Canada: Patient Voices From Bench to Bedside and Beyond, Journal of Cardiac Failure, November 2025 Read Post »

New edition of emPHasis, the UK Pulmonary Hypertension Association (PHA UK)’s magazine is just out

The two main highlights of this edition are the report of the UK Pulmonary Hypertension survey on what symptoms affect patients most (pages 9-12) and the association’s 25th anniversary celebrations in Birmingham (pages 16-18). For the survey there were 232 responses from patients and 35 responses from caregivers. KEY FINDINGS – THE PATIENT VIEW MOST

New edition of emPHasis, the UK Pulmonary Hypertension Association (PHA UK)’s magazine is just out Read Post »

Approach to Lung Transplantation in Pulmonary Arterial Hypertension: A Delphi Consensus on Behalf of the Transplant Task Force of the Pulmonary Vascular Research Institute (PVRI), April 2025

A modified Delphi consensus was conducted by the Pulmonary Vascular Research Institute (PVRI) Lung Transplantation Workstream, involving 29 international experts on pulmonary arterial hypertension (PAH) and lung transplantation. The process generated consensus ( mean scores >_2.5 on Likert scale ) across 141 out of 223 statements relating to when to refer pulmonary arterial hypertension patients

Approach to Lung Transplantation in Pulmonary Arterial Hypertension: A Delphi Consensus on Behalf of the Transplant Task Force of the Pulmonary Vascular Research Institute (PVRI), April 2025 Read Post »

Free publication of the month on “Menopause and Pulmonary Hypertension”, by the UK Pulmonary Hypertension Association PHA UK

Menopause affects all women in the pulmonary hypertension community at some stage of their life. A free publication by the Pulmonary Hypertension Association UK answers common questions, shares real experiences, and brings expert advice to support women who are going through the process. Order it here

Free publication of the month on “Menopause and Pulmonary Hypertension”, by the UK Pulmonary Hypertension Association PHA UK Read Post »

August 2025 edition of “Rundbrief”, the official magazine of the German pulmonary hypertension association ph e.v., is now out

The German pulmonary hypertension association ph e.v. has published the August edition of its magazine “Rundbrief”, very rich in content as always. Key topics covered include: Research and Medical Advances: Clinical Practice: Professional Development: PDF In German available here

August 2025 edition of “Rundbrief”, the official magazine of the German pulmonary hypertension association ph e.v., is now out Read Post »

Menopause and pulmonary hypertension, a new publication by the UK Pulmonary Hypertension Association, PHA UK

Menopause affects many women in the pulmonary hypertension community. This new publication by the UK Pulmonary Hypertension Association, PHA UK, answers common questions, shares real experiences, and brings expert advice to help make things a little easier for patients. Order this free resource on the PHA UK website at this link

Menopause and pulmonary hypertension, a new publication by the UK Pulmonary Hypertension Association, PHA UK Read Post »

The Role of Psychological Distress on Health-Related Quality of Life, Fatigue, and Pain in Adults With Pulmonary Hypertension, Pulmonary Circulation, June 17, 2025

A study published in Pulmonary Circulation on June 17, 2025 has examined the relationships between fatigue, pain, anxiety, depression, and quality of life in 68 adults with pulmonary hypertension, recruited from global pulmonary hypertensions associations, who completed a series of self-report measures. The researchers found alarmingly high rates of these symptoms: 86.8% experienced clinical levels

The Role of Psychological Distress on Health-Related Quality of Life, Fatigue, and Pain in Adults With Pulmonary Hypertension, Pulmonary Circulation, June 17, 2025 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 »

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 »

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 »

Update on the Pulmonary Vascular Research Institute (PVRI)’s Pulmonary Hypertension Global Survey (PH GPS)

Almost 4,000 patients and carers across 85 countries completed Phase 1 of the Pulmonary Hypertension Global Patient Survey (PH GPS). The survey was translated into 24 languages and launched in October 2023. The survey was written by a multidisciplinary panel of pulmonary hypertension specialists and patient group advocates from the pulmonary hypertension associations of Europe,

Update on the Pulmonary Vascular Research Institute (PVRI)’s Pulmonary Hypertension Global Survey (PH GPS) Read Post »

Overcoming Depression & Low Mood: A self-help programme for people with pulmonary hypertension by the Pulmonary Hypertension Association UK, PHA UK.

Developed by psychologists, and supported by the Pulmonary Hypertension Association UK, this four-week programme consists of a series of workbooks based on Cognitive Behavioural Therapy (CBT) to help you change your thinking habits and behaviours. You can work through them in your own time and in your own home. The programme has been tested with

Overcoming Depression & Low Mood: A self-help programme for people with pulmonary hypertension by the Pulmonary Hypertension Association UK, PHA UK. Read Post »

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