The Alliance for Pulmonary Hypertension is proud to present its “Pulmonary Hypertension Knowledge Sharing Platform” (PH-KSP) initiative on this very special day for the pulmonary hypertension community! World PH Day, May 5, 2023

After a very intense two years of brainstorming sessions, about one hundred weekly online Zoom calls, and over one thousand email exchanges, here we are, ready to launch our Pulmonary Hypertension Knowledge Sharing Platform (PH-KSP) and our online webinar series! This initiative is open to all those who wish to contribute and, as a constantly […]

The Alliance for Pulmonary Hypertension is proud to present its “Pulmonary Hypertension Knowledge Sharing Platform” (PH-KSP) initiative on this very special day for the pulmonary hypertension community! World PH Day, May 5, 2023 Read Post »

“Phase 3 Trial of Sotatercept for Treatment of Pulmonary Arterial Hypertension”, New England Journal of Medicine, April 20, 2023

A recent article titled “Phase 3 Trial of Sotatercept for Treatment of Pulmonary Arterial Hypertension”, published in the New England Journal of Medicine, reports on the results of a multicenter, double-blind, phase 3 trial in which adults with pulmonary arterial hypertension (functional class II or III) who were receiving stable background therapy were randomly assigned

“Phase 3 Trial of Sotatercept for Treatment of Pulmonary Arterial Hypertension”, New England Journal of Medicine, April 20, 2023 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 »

A study investigating how intimacy is affected by pulmonary hypertension, initiated by the Board of the Dutch Pulmonary Hypertension Association, was published in “Clinical Research in Cardiology” on April 30, 2023

The aim of this study was to investigate sexual functioning in men and women with pulmonary hypertension. The initiative to undertake this study was taken some years ago by members of the Board of Stichting Pulmonale Hypertensie, the Dutch Pulmonary Hypertension Association, who asked healthcare professionals to address the issue of sexuality in relation to

A study investigating how intimacy is affected by pulmonary hypertension, initiated by the Board of the Dutch Pulmonary Hypertension Association, was published in “Clinical Research in Cardiology” on April 30, 2023 Read Post »

Proposed revision of EU pharmaceutical laws, released on April 26, 2023, will contribute to making the EU regulatory framework more patient-centred

On Wednesday April 26, 2023, the European Commission adopted a proposal for a new Directive and a new Regulation, which revise and replace the existing general pharmaceutical legislation. The EU Commission’s proposed revisions include proposals to update the EU’s Regulations on Orphan Medicinal Products and Paediatric Medicines, which are very important to Europe’s population of

Proposed revision of EU pharmaceutical laws, released on April 26, 2023, will contribute to making the EU regulatory framework more patient-centred Read Post »

IMPAHCT, a Phase 2b/3 study investigating a potential new medication, AV-101, developed by aerovate therapeutics, for patients with pulmonary arterial hypertension, April 30, 2023

AV-101 is an investigational, proprietary dry powder inhaled formulation of imatinib which is intended to address the underlying hyperproliferation of cells within the narrowed arteries of the lungs. It is designed to deliver antiproliferative therapy directly to the lungs, allowing more of the drug to access the diseased tissues directly while simultaneously reducing systemic exposure

IMPAHCT, a Phase 2b/3 study investigating a potential new medication, AV-101, developed by aerovate therapeutics, for patients with pulmonary arterial hypertension, April 30, 2023 Read Post »

Samantha Ciurlini,12 years post double lung transplant, returns from the World Transplant Games in Perth with a gold medal and three silver ones, April 24, 2023

Samantha Ciurlini’s journey with pulmonary arterial hypertension began in 2005 when she received her diagnosis. Twelve years ago, she underwent a life-changing double lung transplant surgery at the renowned Vienna General Hospital (AKH). Prior to her diagnosis, Samantha had a passion for volleyball and even played at a semi-professional level. Despite the challenges she faced,

Samantha Ciurlini,12 years post double lung transplant, returns from the World Transplant Games in Perth with a gold medal and three silver ones, April 24, 2023 Read Post »

The French, Swiss and German pulmonary hypertension associations joint meeting in Freiburg im Breisgau, April 22, 2023

The German, French and Swiss pulmonary hypertension associations held a joint meeting in Freiburg im Breisgau on April 22, 2023. An information stand was set up by ph e.v., the German pulmonary hypertension association, organiser of the meeting, on the square where the market which is held every Saturday morning, near the cathedral. Our brochures,

The French, Swiss and German pulmonary hypertension associations joint meeting in Freiburg im Breisgau, April 22, 2023 Read Post »

A video by the Pulmonary Hypertension Association UK (PHA UK) explains how “one-pan meals” could be the key to making nutritious food without feeling drained, April 22, 2023

In this video, Chermaine Kwant, a registered dietician who has her own experience of living with pulmonary hypertension and lung transplant, explains how “one-pan meals” could be the key to making nutritious food without feeling drained. Watch the video at this link Iti s possible to activate subtitles in many different languages Disclaimer While every

A video by the Pulmonary Hypertension Association UK (PHA UK) explains how “one-pan meals” could be the key to making nutritious food without feeling drained, April 22, 2023 Read Post »

An Interview With Pulmonary Hypertension Association (PHA) President and CEO Matt Granato for the RareDiseaseAdvisor, April 19, 2023

Matt Granato, who assumed leadership of the Pulmonary Hypertension Association (PHA) in January 2021, was born and raised in Argentina. He is the third president in the PHA’s 32-year history. Granato, 47, has over two decades of experience working for nonprofit and healthcare associations. Before coming to the PHA, he led the Society for Maternal-Fetal

An Interview With Pulmonary Hypertension Association (PHA) President and CEO Matt Granato for the RareDiseaseAdvisor, April 19, 2023 Read Post »

On April 20, 2023, the Pulmonary Vascular Research Institute (PVRI) launched a survey about access to pulmonary hypertension education, diagnosis and care.

The PVRI survey is addressed at health care professionals to identify gaps and challenges that limit access to quality professional clinical care for patients with pulmonary hypertension. The results will be used to develop action plans to help address local needs, mainly in the education, diagnosis, and treatment of pulmonary vascular diseases. The survey results

On April 20, 2023, the Pulmonary Vascular Research Institute (PVRI) launched a survey about access to pulmonary hypertension education, diagnosis and care. Read Post »

The Pulmonary Hypertension Association South Africa (PHA SA) is partnering with the Jenna Lowe trust to host a Patient Symposium on May 13, 2023, in Cape Town – the very first of its kind, a historic date for the country and community

The Pulmonary Hypertension Association South Africa (PHA SA) is excited to partner with another organisation – the Jenna Lowe trust – to host a PH Patient Symposium in May for PH month in Cape Town – the very first of its kind so it is historic for the country and community. See below for the

The Pulmonary Hypertension Association South Africa (PHA SA) is partnering with the Jenna Lowe trust to host a Patient Symposium on May 13, 2023, in Cape Town – the very first of its kind, a historic date for the country and community Read Post »

Minimally invasive robot-assisted lung transplant surgery (without opening the chest) carried out in Spain at the Val d’Hebron hospital, April 17, 2023

Commentary by Prof. Olaf Mercier, M.D., Ph.D., Thoracic Surgeon, Marie Lannelongue Hospital, France Minimally invasive surgery has shown its value in lung resection surgery by reducing the impact of the surgical procedure and accelerating recovery after the operation. These techniques did not allow for lung transplantation, which is a more risky procedure because the connections

Minimally invasive robot-assisted lung transplant surgery (without opening the chest) carried out in Spain at the Val d’Hebron hospital, April 17, 2023 Read Post »

Promoted by the Active Citizenship Network, the celebration of the 17th Edition of the European Patients’ Rights Day took place on April 26, 2023

Active Citizenship Network, together with civic and patient organizations from all over Europe, has taken the initiative to organize – every year since 2007 – the European conference dedicated to the celebration of the European Patients’ Rights Day, based on the calendar of EU institutions. Over the years, the European institutions have always shown great

Promoted by the Active Citizenship Network, the celebration of the 17th Edition of the European Patients’ Rights Day took place on April 26, 2023 Read Post »

“PH Roundtable: Pros and Cons of the 2022 ERS/ESC Guidelines: Practicality vs Real World View”, Advances in Pulmonary Hypertension, April 13, 2023

This article, published in Advances in Pulmonary Hypertension, refers to a round table covened to discuss the 2022 joint ERS/ESC guidelines on pulmonary hypertension. The round table was attended by Dr Thenappan Thenappan, University of Minnesota, Minneapolis; Dr Marc Humbert, Université Paris-Saclay, Paris; Dr Vallerie McLaughlin, University of Michigan, Ann Arbor; Dr Hilary DuBrock, Mayo

“PH Roundtable: Pros and Cons of the 2022 ERS/ESC Guidelines: Practicality vs Real World View”, Advances in Pulmonary Hypertension, April 13, 2023 Read Post »

A toolkit offering a very wide range of resources to promote Pulmonary Hypertension Awareness Day 2023, May 5, is now available on the dedicated website

The Pulmonary Hypertension Awareness Day 2023 toolkit is now available at this link On on May 5 very year since 2012 pulmonary hypertension organisations and groups around the world participate in activities to raise awareness of the disease. Many of the patient associations taking part in the celebrations organise sports events and using the slogan “Get breathless for PH”.

A toolkit offering a very wide range of resources to promote Pulmonary Hypertension Awareness Day 2023, May 5, is now available on the dedicated website Read Post »

The EU is running a public consultation on a “European Disability Card” to make it easier for people with disabilities to access some services while travelling within the EU

The European Commission (EC) is working on a proposal for an EU Disability Card, to make it easier for people with disabilities to access some services while travelling within the EU. There is currently no mutual recognition of disability status between the EU Member States. This can cause difficulties for persons with disabilities travelling in the EU.

The EU is running a public consultation on a “European Disability Card” to make it easier for people with disabilities to access some services while travelling within the EU Read Post »

24th edition of the World Transplant Games started on April 15, 2023. An event to demonstrate that health and fitness can be achieved post-transplant

Starting on April 15, 2023, 46 member countries came together to compete in 17 sporting disciplines at the 24th World Transplant Games. This is the first reunion of the community of transplant recipients, living donors, donor families, friends and supporters after four years. For over 40 years, the World Transplant Games have demonstrated that health and fitness

24th edition of the World Transplant Games started on April 15, 2023. An event to demonstrate that health and fitness can be achieved post-transplant Read Post »

Launch of the “Patient Engagement Resource Center” (PERC), a platform to promote patient engagement in research

The Patient Engagement Resource Centre (PERC) has selected relevant public resources to help translational researchers understand the basics of patient engagement, and guide them through the different phases of patient engagement: from planning to conducting and evaluating. The platform is addressed to researchers but it is also a practical tool for patients to access and

Launch of the “Patient Engagement Resource Center” (PERC), a platform to promote patient engagement in research Read Post »

Interview with Eva Otter, a pulmonary hypertension patient and President of PHA Europe, the European Pulmonary Hypertension Association, April 7, 2023

Eva Otter has been living with pulmonary hypertension for twenty years. She was diagnosed with pulmonary hypertension in 2003. At that time she was a busy medical laboratory manager in Lower Austria and also supported her boss at conferences, with publications etc.In this article Eva shares her patient journey over the past years, how she

Interview with Eva Otter, a pulmonary hypertension patient and President of PHA Europe, the European Pulmonary Hypertension Association, April 7, 2023 Read Post »

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