Exclusive interview with Prof. Serpil Erzurum, MD, Cleveland Clinic’s Chief Research and Academic Officer, for the Turkish pulmonary Hypertension Association (PAHSSc)

Prof. Serpil Erzurum is Cleveland Clinic’s Chief Research and Academic Officer and Chair of the Lerner Research Institute. Dr. Erzurum has won numerous awards, has published more than 300 articles, and is among the top 1% cited researchers in the world. This interview was originally published in English on Nefes, the magazine of the Turkish […]

Exclusive interview with Prof. Serpil Erzurum, MD, Cleveland Clinic’s Chief Research and Academic Officer, for the Turkish pulmonary Hypertension Association (PAHSSc) Read Post »

Esclusive interview with Emeritus Professor Lewis J. Rubin, for the Turkish Pulmonary Hypertension Association PAHSSc

Prof. Lewis J. Rubin with Kamil Hamidullah, immediate past President of the PAHSSc This interview was originally published in Turkish on Nefes, the magazine of the Turkish Pulmonary Hypertension Association PAHSSc in December 2021.Our sincerest thanks go to our friends and colleagues at the PAHSSc for graciously allowing us to republish this interview and share with

Esclusive interview with Emeritus Professor Lewis J. Rubin, for the Turkish Pulmonary Hypertension Association PAHSSc 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 »

Exclusive interview with Prof. Maurice Beghetti on pulmonary arterial hypertension and Eisenmenger Syndrome in children and adolescents for the Turkish Pulmonary Hypertension Association, PAHSSc

This interview was originally published in Turkish on Nefes, the magazine of the Turkish Pulmonary Hypertension Association PAHSSc, in June 2022. We extend our sincerest thanks to our friends and colleagues at the PAHSSc for graciously permitting us to republish and share it with the wider pulmonary hypertension community. Professor Maurice Beghetti is Head of

Exclusive interview with Prof. Maurice Beghetti on pulmonary arterial hypertension and Eisenmenger Syndrome in children and adolescents for the Turkish Pulmonary Hypertension Association, PAHSSc Read Post »

Exclusive interview with Prof. Sean Gaine, Director of the Irish National Pulmonary Hypertension Unit, for the Turkish Pulmonary Hypertension Association PAHSSc

Photo: Prof. Sean Gaine with Kamil Hamidullah, immediate Past President of PAHSSc, the Turkish Pulmonary Hypertension Association. This interview was originally published in Turkish on Nefes, the magazine of the Turkish Pulmonary Hypertension Association PAHSSc, on the March 2023 edition. Our sincerest thanks go to the PAHSSc for very generously sharing this interview with the

Exclusive interview with Prof. Sean Gaine, Director of the Irish National Pulmonary Hypertension Unit, for the Turkish Pulmonary Hypertension Association PAHSSc Read Post »

20 Latin American patient advocacy groups, including for pulmonary hypertension, are speaking at the most important scientific event of respiratory health in Latin America, “SAREAL”

The Respiratory Health, Allergy, and Atopy Summit (“SAREAL” as it reads its acronym in Spanish) brings together organizations working for chronic respiratory diseases (prevalent and rare), allergic, and atopic conditions to explore the underlying connection and commonalities. This year it is taking place on August 11 and 12 in Punta Cana, the Dominican Republic. It

20 Latin American patient advocacy groups, including for pulmonary hypertension, are speaking at the most important scientific event of respiratory health in Latin America, “SAREAL” Read Post »

Slides and recording of our webinar on “Patients as Partners and Shared Decision Making” -June 6, 2023

Download the webinar slides here Learning objectives of the webinar Our goal is to empower individuals living with pulmonary hypertension and their families, equipping them with actionable insights and practical knowledge. Transcript ARADIGM FOR PULMONARY HYPERTENSION CARE”, June 6, 2023 NB. This transcript can be translated into your preferred language – use orange button at

Slides and recording of our webinar on “Patients as Partners and Shared Decision Making” -June 6, 2023 Read Post »

In a TEDx talk Migdalia Denis, Leader of the Pulmonary Hypertension Latin Society, explores the transformative power of adversity and how it can lead us to discover our true purpose

Migdalia Denis, leader of the Latin America Pulmonary Hypertension Association (Sociedad Latina de Hipertensión Pulmonar), was invited on May 18, 2018, to deliver a TEDx talk. Migdalia has recently sent us the link to her talk and asked us to share it on the PH-KSP, in the hope that her message may inspire others to

In a TEDx talk Migdalia Denis, Leader of the Pulmonary Hypertension Latin Society, explores the transformative power of adversity and how it can lead us to discover our true purpose Read Post »

The Asociación Nacional de Hipertension Pulmónar, ANHP, is sharing engaging and uplifting posts daily on social media

We were drawn to some posts shared by the ANHP on LinkedIn to send positive messages to patients. It features: – Concise, engaging, and encouraging messages– Appealing, evocative, and fun visuals We have taken four of the posts as examples and here are the messages: We are going slow but we are moving forward (turtle)

The Asociación Nacional de Hipertension Pulmónar, ANHP, is sharing engaging and uplifting posts daily on social media Read Post »

The Dutch Pulmonary Hypertension Association is delighted to announce its 2023 Annual Patient Meeting, taking place in Nijkerk on November 11, 2023

Save the date! The Dutch Pulmonary Hypertension Association is delighted to announce its 2023 Annual Patient Meeting, taking place in Nijkerk on November 11, 2023. This year’s theme is “Moving forward together,” reflecting the spirit of unity and progress within the pulmonary hypertension community. The event features a dynamic program, including informative presentations on clinical

The Dutch Pulmonary Hypertension Association is delighted to announce its 2023 Annual Patient Meeting, taking place in Nijkerk on November 11, 2023 Read Post »

The basics of clinical trials and patient participation in an online platform developed by the EU-financed ECRAN project

The European Communication on Research Awareness Needs, the ECRAN project is an online platform that is available in five languages in addition to English (German, Italian, French, Polish, Spanish), which contains a wealth of information about clinical trials, and explains everything patients need to know in order to take part in them. Rea more on

The basics of clinical trials and patient participation in an online platform developed by the EU-financed ECRAN project Read Post »

The Fundación Contra la Hipertensión Pulmonar, Spain, shares an important resource with the PH-KSP, a new book by a pulmonary arterial hypertension patient titled “The Expert and Informed Patient”

Salvador Calderón, a patient affected by Pulmonary Hypertension and a volunteer with the Foundation against Pulmonary Hypertension in Spain, has released his third book, titled “The Expert and Informed Patient.” This compelling narrative portrays the journey of a patient through all stages of pulmonary hypertension, highlighting the constant struggle to improve the quality of life

The Fundación Contra la Hipertensión Pulmonar, Spain, shares an important resource with the PH-KSP, a new book by a pulmonary arterial hypertension patient titled “The Expert and Informed Patient” Read Post »

Physicians at the Medical Faculty of the Gazi University in Ankara, Turkey, celebrate World Pulmonary Hypertension on May 5 by launching the piece of music they have composed for patients

To commemorate World Pulmonary Hypertension 2023, May 5, physicians at the Medical Faculty, Gazi University – Ankara, will be launching the piece of music they have composed for their patients in the course of a concert. A member of the Turkish pulmonary hypertension association of Turkey, PAHSSc, and a patient, will also be contributing to the

Physicians at the Medical Faculty of the Gazi University in Ankara, Turkey, celebrate World Pulmonary Hypertension on May 5 by launching the piece of music they have composed for patients Read Post »

PHantasticals, an initiative to increase awareness of pulmonary hypertension among patients, caregivers and the general public, unveils its new website on World Pulmonary Hypertension Day 2023, May 5

PHantasticals is an awareness raising initiative promoted by Ferrer. It is addressed to patients, caregivers and society large. The website features testimonials from patients and health care professionals as well as useful infographics on pulmonary hypertension (PH), pulmonary arterial hypertension (PAH), and pulmonary hypertension due to Interstitial Lung Disease (PH-ILD) Learn more on the PHantasticals

PHantasticals, an initiative to increase awareness of pulmonary hypertension among patients, caregivers and the general public, unveils its new website on World Pulmonary Hypertension Day 2023, May 5 Read Post »

The Vestingloop 2023, a sporting event to raise awareness and funds for pulmonary hypertension taking place in ‘s-Hertogenbosch, Netherlands, May 14, 2023

The Vestingloop has multiple components; running, trailrun and walking. There are different distances so basically everyone can participate. Last year this event had 7.000 participants. The 17th edition is taking place on May 14, from 9 to 4 pm in ‘s-Hertogenbosch, Netherlands, and, thanks to the charity “Heb hart voor longen” (Have a heart for

The Vestingloop 2023, a sporting event to raise awareness and funds for pulmonary hypertension taking place in ‘s-Hertogenbosch, Netherlands, May 14, 2023 Read Post »

Team PHenomenal Hope launches a new pulmonary hypertension educational website, “Learn Live Breathe PH”, on Rare Disease Day, February 28, 2023

Nonprofit Team PHenomenal Hope launched its new educational website “Learn Live Breathe PH” on Rare Disease Day, February 28, 2023. Written by experts in the field the platform was created to help pulmonary hypertension patients navigate the complexities of living with this chronic illness and feel empowered by relevant, scientific information. The website provides guidance

Team PHenomenal Hope launches a new pulmonary hypertension educational website, “Learn Live Breathe PH”, on Rare Disease Day, February 28, 2023 Read Post »

Pisana Ferrari and Gergely Meszaros discuss their contribution to the new ESC/ERS pulmonary hypertension guidelines in an interview for the Belgian Flemish Association’s January 2023 newsletter

The Belgian Flemish Association, Pulmonale hypertentie vzw, has published an interview with patient advocates Gergely Meszaros (PHA Europe) and Pisana Ferrari (AIPI, Italian Pulmonary Hypertension Association, Italy) in the latest edition of their magazine “ADEMLOS”. In this interview Gergely and Pisana discuss their contribution to the new ESC/ERS pulmonary hypertension guidelines, and in particular: The

Pisana Ferrari and Gergely Meszaros discuss their contribution to the new ESC/ERS pulmonary hypertension guidelines in an interview for the Belgian Flemish Association’s January 2023 newsletter Read Post »

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