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 »

Information resources on chronic thromboembolic pulmonary hypertension (CTEPH) by the Pulmonary Hypertension Association of Canada, PHA Canada

Chronic thromboembolic pulmonary hypertension (CTEPH) is one of the two rare forms of pulmonary hypertension. It is the result of multiple or recurrent blood clots in the lungs. It is within Group 4 of the current official pulmonary hypertension classification. Learn more about CTEPH at this link on the PHA Canada website

Information resources on chronic thromboembolic pulmonary hypertension (CTEPH) by the Pulmonary Hypertension Association of Canada, PHA Canada Read Post »

Information resource for newly diagnosed pulmonary hypertension patients and their caregivers, by the Pulmonary Hypertension Association of Canada, PHA Canada

A diagnosis of pulmonary hypertension is life-changing and can significantly impact all aspects of a person’s life. This resource, developed by the Pulmonary Hypertension Association Canada, PHA Canada, provides answers to a few frequently asked questions to help patients get started on their journey. Download the resource at this link on the PHA Canada website

Information resource for newly diagnosed pulmonary hypertension patients and their caregivers, by the Pulmonary Hypertension Association of Canada, PHA Canada Read Post »

How does pulmonary arterial hypertension affect the heart and lungs? A fact sheet developed by the Pulmonary Hypertension Association of Canada, PHA Canada

This resource, developed by the Pulmonary Hypertension Association Canada, PHA Canada, provides a simple explanation, and features great visuals, of the pulmonary circulation mechanism and how pulmonary arterial hypertension affects the heart and lungs. Download the fact sheet at this link

How does pulmonary arterial hypertension affect the heart and lungs? A fact sheet developed by the Pulmonary Hypertension Association of Canada, PHA Canada Read Post »

Emotional wellness handbook for pulmonary hypertension patients, developed by the Pulmonary Hypertension Association Canada, PHA Canada

PHA Canada has developed a “Wellness Wheel”, a tool that can help patients to identify the things that you need to do to stay balanced in these critical areas of life: mental, emotional, physical, environmental, spiritual, recreational and social. This personal assessment tool will allow patients to reflect on each of these areas of their

Emotional wellness handbook for pulmonary hypertension patients, developed by the Pulmonary Hypertension Association Canada, PHA Canada 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 »

Understanding the Signs and Symptoms of Pulmonary Hypertension in a child, an educational video by the Pulmonary Hypertension Association, PHA, April 3, 2023

April 4, 2023 Michelle Sykes, M.D., Ph.D., discusses key signs and symptoms of paediatric pulmonary hypertension which may be confused with other common childhood conditions. This video is presented as part of the PHA Classroom. Click here for the YouTube link to the video

Understanding the Signs and Symptoms of Pulmonary Hypertension in a child, an educational video by the Pulmonary Hypertension Association, PHA, April 3, 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 »

The UK Pulmonary Hypertension Association, PHA UK, launched a nutrition section on its website, April 22, 2023

Healthy lifestyle alongside medical treatment is very important in pulmonary hypertension. The aim of the new “Nutrition and PH” section on the PHA UK’s website is to help patients understand more about nutrition. It contains expert advice, videos, details of the PHA UK research in this area, and the page is open for patient questions.

The UK Pulmonary Hypertension Association, PHA UK, launched a nutrition section on its website, 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 »

“Eroi anonimi” (“Anonymous heroes”), an Italian online platform aimed at raising awareness about the importance of organ donation in the general population

“Eroi anonimi” (“Anonymous heroes”) is an Italian online platform aimed at the promotion of organ donation among the general population. The slogan of this awareness initiative is “You can be a hero even without superpowers”. The platform features information about the importance of organ donation, on the different procedures that are used in Italy to

“Eroi anonimi” (“Anonymous heroes”), an Italian online platform aimed at raising awareness about the importance of organ donation in the general population 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 »

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