“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 »

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 »

Interesting news! Recent research suggests that Italian musical genius Antonio Vivaldi suffered from pulmonary hypertension!

A recent study suggests that Italian composer Antonio Vivaldi, known for his musical genius, may have suffered from pulmonary hypertension. The study was led by the esteemed Italian oncologist, and accomplished musician, Prof. Giuseppe Gullo, and was published in Studi Vivaldiani, the annual journal of the Istituto Italiano Antonio Vivaldi (founded in 1947), which has

Interesting news! Recent research suggests that Italian musical genius Antonio Vivaldi suffered from pulmonary hypertension! Read Post »

Findings from the UK Pulmonary Hypertension Association’s survey on nutrition and pulmonary arterial hypertension now available

The UK Pulmonary Hypertension Association launched a survey on nutrition and pulmonary arterial hypertension last year in March in which they asked patients about eating habits, food preferences, and cooking or weight management challenges. The findings were announced at the Pulmonary Vascular Research Institute (PVRI)’s congress in January 2024 and, more recently, on social media.

Findings from the UK Pulmonary Hypertension Association’s survey on nutrition and pulmonary arterial hypertension now available 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 »

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 »

Newsletters involve a lot of effort – why limit all that work to our own local communities? Break down those borders and share the knowledge!

As dedicated volunteers for pulmonary hypertension associations, we know just how much work there is in putting together our newsletters. Beyond content creation, it involves research, writing, photo selection, layout design, printing, and distribution. Newsletters connect communities, providing updates on crucial developments. Our mission at PH-KSP is to break barriers, fostering the exchange of knowledge

Newsletters involve a lot of effort – why limit all that work to our own local communities? Break down those borders and share the knowledge! Read Post »

The Spanish edition of “Navigating with Pulmonary Hypertension”, a booklet for the newly diagnosed by the Pulmonary Hypertension Association USA, is now available

“Navigating Pulmonary Hypertension” is a resource for individuals living with pulmonary hypertension and their loved ones. The 60-page booklet aims to provide answers, support, and hope during the first weeks, months, or years after receiving a pulmonary hypertension diagnosis. The publication offers an overview of the diagnosis, treatment, symptoms, and quality of life. It also

The Spanish edition of “Navigating with Pulmonary Hypertension”, a booklet for the newly diagnosed by the Pulmonary Hypertension Association USA, is now available Read Post »

A brief guide to pulmonary arterial hypertension, in FAQ format, just released by AIPI, Italian Pulmonary Hypertension Association

AIPI, the Italian Pulmonary Hypertension Association, has just released a new booklet in Italian on pulmonary arterial hypertension, featuring a series of questions and answers, interwoven with images. Accompanying the booklet is a glossary of frequently used terms. The booklet aims to provide patients, family members and carers with concise and easy-to-understand information about pulmonary

A brief guide to pulmonary arterial hypertension, in FAQ format, just released by AIPI, Italian Pulmonary Hypertension Association Read Post »

“Introduction to Exercise”, a video series by the Pulmonary Hypertension Association (PHA), September 16, 2023

PHA’s “Introduction to Exercise” video series offers five videos and printable resources on the benefits of exercise and pulmonary rehabilitation programs, as well as yoga, strength training and cardio exercise instruction. The five videos cover the following topics IMPORTANT! The PHA specifies that patients must consult their pulmonary hypertension care team before starting to exercise!

“Introduction to Exercise”, a video series by the Pulmonary Hypertension Association (PHA), September 16, 2023 Read Post »

The Canadian pulmonary hypertension association, PHA Canada, publishes a new resource to help children and their families navigate life at school

This guide, recently published by the Canadian pulmonary hypertension association, PHA Canada, is designed as a tool to help teachers and school staff learn about pulmonary hypertension and fostering open communication and understanding. The Guide includes the following documents: Read more at this link on the PHA Canada website

The Canadian pulmonary hypertension association, PHA Canada, publishes a new resource to help children and their families navigate life at school Read Post »

The Summer edition of PHA Europe’s “Mariposa Journal” reports on the exciting events held across Europe to celebrate World Pulmonary Hypertension Day, May 5

Huge success for this year’s World Pulmonary Hypertension Day on May 5! The summer edition of the Mariposa Journal reports on the exciting events organised in 22 European countries to celebrate this occasion, and on the social media campaign which accompanied it, which reached an estimated 6 million individuals worldwide. World PH Day is a

The Summer edition of PHA Europe’s “Mariposa Journal” reports on the exciting events held across Europe to celebrate World Pulmonary Hypertension Day, May 5 Read Post »

Interesting articles of “Advances in PH”, including on mental health, the role of caregivers and the use of wearables in pulmonary hypertension, August 21, 2023

Advances in Pulmonary Hypertension is the USA Pulmonary Hypertension Association‘s quarterly medical journal, directed by an editorial board of renowned experts with the oversight of PHA’s Scientific Leadership Council. The latest edition, Vol.22, N°2, 2023, features many interesting articles. Topics covered include: Full text of this edition of Advances in Pulmonary Hypertension is available at this link

Interesting articles of “Advances in PH”, including on mental health, the role of caregivers and the use of wearables in pulmonary hypertension, August 21, 2023 Read Post »

The Latvian Pulmonary Hypertension Association, Pulmonālās Hipertensijas Biedrība (PHB), launches information booklet on clinical trials to celebrate its 12th anniversary, August 4, 2023

On August 4, 2023 the Latvian Pulmonary Hypertension Association, Pulmonālās Hipertensijas Biedrība (PHB), held an event in Riga, the capital of Latvia, to celebrate its 12th anniversary. Check out our article about this event at this link. The association took this occasion to launch a new and very useful resource for patients. The new booklet,

The Latvian Pulmonary Hypertension Association, Pulmonālās Hipertensijas Biedrība (PHB), launches information booklet on clinical trials to celebrate its 12th anniversary, August 4, 2023 Read Post »

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