November is “Pulmonary Hypertension Awareness Month”, an annual observance established by the Pulmonary Hypertension Association USA (PHA)

November the 1st marks the beginning of Pulmonary Hypertension Awareness month, an initiative of the Pulmonary Hypertension Association (PHA). This year’s theme, “Let Your Light Shine,” celebrates the dedication of the pulmonary hypertension community in raising awareness, advocating for improved care, and supporting those with pulmonary hypertension through advocacy, volunteering, fundraising, and education. The Pulmonary […]

November is “Pulmonary Hypertension Awareness Month”, an annual observance established by the Pulmonary Hypertension Association USA (PHA) Read Post »

Why compassion in healthcare matters, a blog post by Dr. Iain Armstrong, Chair of the Pulmonary Hypertension Association UK, October 15, 2024

As both a nurse and Chair of the Pulmonary Hypertension Association UK, Dr. Iain Armstrong is passionate about doing the right thing for patients. Compassion, he believes, lies at the heart of nursing and excellence in healthcare. Compassion, derived from the Latin “compassion” meaning “to suffer together,” is a vital strength that enables nurses to

Why compassion in healthcare matters, a blog post by Dr. Iain Armstrong, Chair of the Pulmonary Hypertension Association UK, October 15, 2024 Read Post »

“What You Need to Know After a Pulmonary Embolism”, a new resource by the Pulmonary Hypertension Association, USA

Between 0.5% and 5% of people who experience a pulmonary embolism (a blood clot) later develop chronic thromboembolic pulmonary hypertension (CTEPH). Learn more about pulmonary embolism and the risk for chronic thromboembolic pulmonary hypertension in the free Pulmonary Hypertension Association USA brochure titled “What You Need to Know After a Pulmonary Embolism” available at this

“What You Need to Know After a Pulmonary Embolism”, a new resource by the Pulmonary Hypertension Association, USA Read Post »

The European Lung Foundation (ELF)’s 2023 Annual Report highlights its ongoing efforts to to collaborate with patients, patient organisations, healthcare professionals and the public

The Alliance for Pulmonary Hypertension is a proud member of the European Lung Foundation (ELF) Patient Organisation Network and is represented in the European Lung Foundation Pulmonary Hypertension Patient Advisory Group (PH PAG). The European Lung Foundation Patient Advisory Groups and working groups are made up of people who have an interest in a particular

The European Lung Foundation (ELF)’s 2023 Annual Report highlights its ongoing efforts to to collaborate with patients, patient organisations, healthcare professionals and the public Read Post »

Impressive numbers for the latest edition of World Pulmonary Hypertension Day: full report in the summer 2024 edition of Mariposa, PHA Europe’s journal

World Pulmonary Hypertension Day (May 5) is increasingly becoming a pivotal global event for raising awareness about the condition and advocate for improved care, as highlighted by the impressive figures shared in the latest edition of PHA Europe’s magazine, Mariposa. Launched by the Asociación Nacional de Hipertensión Pulmonar ANHP in 2012, World PH Day is

Impressive numbers for the latest edition of World Pulmonary Hypertension Day: full report in the summer 2024 edition of Mariposa, PHA Europe’s journal Read Post »

“Integrating the patient perspective into future pulmonary hypertension clinical trials”, European Society of Cardiology Annual Congress 2024, talk by Pisana Ferrari, member of the ESC Patient Forum

The European Society of Cardiology’s Congress is the foremost gathering in the field of cardiology worldwide. This year’s edition took place in London from 30.8-1.9, 2024, and counted 31,700 participants from 162 countries, including 5,400 faculty and presenters, representatives of the National Cardiac Societies and industry partners. Pisana Ferrari, the Alliance for Pulmonary Hypertension’s Secretary

“Integrating the patient perspective into future pulmonary hypertension clinical trials”, European Society of Cardiology Annual Congress 2024, talk by Pisana Ferrari, member of the ESC Patient Forum Read Post »

Hall Skaara reports back from the Pulmonary Hypertension Association conference in Indianapolis, USA, August 15-18, 2024, where he represented PHA Europe

The US Pulmonary Hypertension Association (PHA) hosted its 15th international Pulmonary Hypertension conference in Indianapolis, Indiana, from August 15-18, 2024. This event gathered approximately 1,100 healthcare professionals, researchers, patients, and advocates from across the globe. The event aimed to strengthen connections and promote collaboration within the pulmonary hypertension community. Key sessions included a joint presentation

Hall Skaara reports back from the Pulmonary Hypertension Association conference in Indianapolis, USA, August 15-18, 2024, where he represented PHA Europe Read Post »

Join the US Pulmonary Hypertension Association and US National Scleroderma Foundation for the “Managing Scleroderma and Pulmonary Arterial Hypertension” live webinar Friday, Sept. 20, 2024

The Pulmonary Hypertension Association in the US in collaboration with the National Scleroderma Foundation is organising a live webinar on September 20, 2024 at 2 p.m. EDT/6 p.m. UTC on “Managing Scleroderma and Pulmonary Arterial Hypertension”. Scleroderma is an autoimmune disease in which the immune system attacks various organs and tissues, including the lungs, kidneys,

Join the US Pulmonary Hypertension Association and US National Scleroderma Foundation for the “Managing Scleroderma and Pulmonary Arterial Hypertension” live webinar Friday, Sept. 20, 2024 Read Post »

The August 2024 edition of “RESPIRO2”, the magazine of the Argentinian Pulmonary Hypertension Association is now out

The Argentinian Pulmonary Hypertension Association – Hipertension Pulmónar Argentina – has just released the tenth edition of the RESPIRO2 Magazine, featuring important information about pulmonary hypertension. This edition features articles about: Read this edition of RESPORO2 and past editions at this link on the Hipertension Pulmónar Argentina website.

The August 2024 edition of “RESPIRO2”, the magazine of the Argentinian Pulmonary Hypertension Association is now out Read Post »

Attitudes towards the use of the “clinical frailty scale” in pulmonary hypertension, a survey by the UK Pulmonary Hypertension Association, PHA UK

A survey was conducted by the UK Pulmonary Hypertension Association to explore the potential use of the “clinical frailty scale” alongside the commonly used EmPHasis-10 questionnaire to better understand how pulmonary hypertension affects patients’ quality of life. The scale, already used in other conditions like chronic obstructive pulmonary disease (COPD), assigns a score based on

Attitudes towards the use of the “clinical frailty scale” in pulmonary hypertension, a survey by the UK Pulmonary Hypertension Association, PHA UK Read Post »

The US Pulmonary Hypertension Association launches a new podcast series called “PH Insights”

The Pulmonary Hypertension Association in the U.S. has introduced a new podcast titled “PH Insights.” This podcast aims to elevate patient voices and foster in-depth discussions with healthcare professionals on various aspects of pulmonary hypertension. In the debut episode, “Filling in the Blanks: Understanding Pulmonary Hypertension, Part 1,” Jenny Yang, an assistant professor of medicine

The US Pulmonary Hypertension Association launches a new podcast series called “PH Insights” Read Post »

Scientific sessions, workshops, and community at the 2024 Annual Meeting of the German pulmonary hypertension association ph e.v., October 25-27, 2024

Friday, October 25, 2024: Saturday, October 26, 2024: 14:30 – Workshop Block I: (Registration required) 16:30 – Workshop Block II: (Registration required) Sunday, October 27, 2024:

Scientific sessions, workshops, and community at the 2024 Annual Meeting of the German pulmonary hypertension association ph e.v., October 25-27, 2024 Read Post »

The key role of patient associations highlighted during discussions at the 5th French Pulmonary Hypertension Network Meeting, “Respiratory Medicine and Research”, Volume 86, 2024

The 5th French Pulmonary Hypertension Network Meeting, convened in Le Kremlin-Bicêtre, France, in 2023, served as a platform to examine current evidence and outstanding questions in pulmonary hypertension, particularly in the context of the recently published 2022 ESC/ERS Guidelines. The French Network is composed of some of France’s key experts in the field of pulmonary

The key role of patient associations highlighted during discussions at the 5th French Pulmonary Hypertension Network Meeting, “Respiratory Medicine and Research”, Volume 86, 2024 Read Post »

A decade of tee-ing off for breath: PHA Canada’s “GolPH for PH” Marks 10 Years of Hope and $160,000 Raised

The Canadian Pulmonary Hypertension Association, PHA Canada, celebrated 10 successful “GolPH for PH” tournaments on July 15, 2024. This tournament started as an endeavour to raise funds and awareness about pulmonary arterial hypertension led by Joan and Pat Paulin, whose daughter Brooke had been diagnosed with the condition. Ten years later over $160,000 have been

A decade of tee-ing off for breath: PHA Canada’s “GolPH for PH” Marks 10 Years of Hope and $160,000 Raised Read Post »

PHA Canada’s PH Community Conference is taking place September 19-21, 2024 in Calgary

The program of PHA Canada’s Community Conference includes plenary sessions, specialized discussion panels and peer discussion groups that will provide community members at all stages of their pulmonary hypertension journeys a safe space to learn something new and connect with PHriends. More details available at this link on the PHA Canada website

PHA Canada’s PH Community Conference is taking place September 19-21, 2024 in Calgary Read Post »

Colleen Brunetti, pulmonary arterial hypertension patient and patient advocate, speaks about her experience with the condition and clinical trials, May 2024

Colleen Brunetti, Past Chair of the Board of the Pulmonary Hypertension Association, speaks about her experience with the condition and taking part in clinical trials in this video, published on the European Lung Foundation YouTube channel. Read more about Colleen and her book “Defining the new normal: A guide to becoming more than your diagnosis”

Colleen Brunetti, pulmonary arterial hypertension patient and patient advocate, speaks about her experience with the condition and clinical trials, May 2024 Read Post »

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