Advancing CTEPH Care: Exploring the MultiModal Management Strategy in the New ESC/ERS Guidelines – webinar recording
Watch the recording here Download the slides Panelists Prof Marion Delcroix – Head of the Pulmonary Hypertension Program at the University Hospital in Leuven Belgium Prof Xavier Jais – Pulmonary Hypertension National Referral Center, Hôpital Bicêtre, Paris, France Moderator Dr. Andreas Reimann of admedicum, experts in Patient Engagement and Access Learning objectives
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Interesting initiative to adapt the 6 minute walk test, PRO measures and finger prick samples for remote use in pulmonary arterial hypertension clinical trials
The most familiar exercise capacity test in the field of pulmonary arterial hypertension is the 6-Minute Walk Test, where patients walk up and down a corridor for 6 minutes while their physiological parameters and distance walked are measured. This test is also used in other, different types of diseases, and Dr Joe Newman, a clinical…
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“Pulmonary arterial hypertension and COVID-19: piecing the puzzle”, Respiratory Medicine and Research, November 2023
A recent article titled “Pulmonary arterial hypertension and COVID-19: piecing the puzzle”, published in Respiratory Medicine and Research, summarises the existing literature on the clinical presentation of COVID-19 in patients with pulmonary arterial hypertension, focusing on shared pathobiology, clinical outcomes, potential treatment strategies, and the need for further research in understanding and managing these conditions.…
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Artificial intelligence could help restore the essential humaneness in medicine by providing the gift of time, The Lancet, October 21, 2023
In the age of artificial intelligence, chat bots and automated services, our quest for empathy becomes more pressing than ever. Counterintuitively, Dr. Eric J. Topal, an American cardiologist, scientist, and best selling author, claims that artificial intelligence has the potential to enhance empathy, particularly in the vital relationship between patients and clinicians. In a recent…
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The Impact and Future of European Reference Networks (ERNs) discussed at a conference in Bilbao, Spain, on October 10-11, 2023
The European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources. The first ERNs were launched in 2017, involving more than 900 highly-specialised healthcare units from over 300 hospitals in 26 EU…
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The US Pulmonary hypertension Association, PHA, is partnering with the Fundación Contra la Hipertensión Pulmonar, Spain, to host a two-part Live webinar series, simulcast in English and Spanish
November 30, 2 pm EST The first webinar, “Hope Through Research in Pulmonary Hypertension: Emerging Developments,” will review emerging pulmonary hypertension research developments and the potential impact they’ll have on the PH community. December 14, 2 pm EST The second webinar, “Hope Through Research in Pulmonary Hypertension: Clinical Trials,” will discuss the clinical trial process,…
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Genetic counselling and testing in pulmonary arterial hypertension (PAH): a consensus statement on behalf of the International Consortium for Genetic Studies in PAH, European Respiratory Journal
Aside from the commonly observed BMPR2 gene (bone morphogenetic protein receptor 2), there are several other genes, each falling into distinct functional categories, that have been identified as contributors to pulmonary arterial hypertension development. This has led both specialized and general healthcare providers to encounter various inquiries about the necessity, methods, and potential outcomes of…
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Scientific presentations, case studies and workshops at the German pulmonary hypertension association ph e.v.’s annual patient meeting, October 20-22, 2023
The German pulmonary hypertension association, ph e.v., held the 24th edition of its Annual Patient Meeting on October 20-22, 2023, at the Education Center of the Hessian State Sports Association in Frankfurt am Main. The ph e.v. annual meetings consistently draw a very large number of participants from all over the country. The program combines…
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Insights from a panel discussion on aging with rare diseases, including pulmonary hypertension, at the World Orphan Drug Congress, Barcelona, November 2, 2023
The World Orphan Drug Congress is the largest and most established orphan drugs and rare diseases meeting of its kind across the globe. Its 14th annual edition took place in Barcelona, Spain, from October 30 to November 3, 2023. There were 1,500+attendees, 300 speakers and 80+exhibitors. On November 2 the President of AIPI Italian Pulmonary Hypertension…
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Top tips for looking after your mental health when you have pulmonary hypertension, a new resource from the phocusonlifestyle.org website of the PHA UK
Sophie Papageorgis is a counsellor and psychotherapist who has lived with pulmonary hypertension since she was a teenager. Check out her top tips for taking care of your mind when you have pulmonary hypertension at this link on the phocusonlifestyle.org website. Sophie invites persons struggling, feeling sad, anxious, or depressed, to reach out for support…
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Prof. Marc Humbert selects his highlights on the topic of pulmonary hypertension from the European Respiratory Society (ERS) 2023 Congress
European Respiratory Society (ERS) Past President Prof. Marc Humbert selects his highlights from the annual congress on the topic of pulmonary hypertension – noting the key messaging and findings from what was presented in this video featured on the ERS Respiratory Channel.
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A European Society for Organ Transplant (ESOT) call to action for a a European effort to monitoring health of patients after transplantation
The steering group of the European Society for Organ Transplant (ESOT) patients’ inclusion initiative invites European transplant patient organizations to endorse and spread the call: Monitoring health after transplantation: A call for a European effort to collect follow up data on transplant recipients and living donors. This call urges organizations dealing with transplantation to work…
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Important announcement! The “Pulmonary Hypertension Global Patient and Carer Survey” (PH GPS) is launching today!
This survey, the first of its kind, has been designed to help improve global understandings of how pulmonary hypertension affects the lives of patients and in what ways pulmonary hypertension care needs to be improved. The survey has been written by a multidisciplinary panel of pulmonary hypertension specialists and patient group advocates from the pulmonary…
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How the European Society of Cardiology (ESC) Patient Forum is contributing to shaping cardiovascular care and clinical guideline development
A recent article, titled “The essential role of patients in advocacy and policy”, published in the European Heart Journal on July 21, 2023, describes the activities of the European Society of Cardiology (ESC) Patient Forum and how it is empowering patients in shaping cardiovascular care. The European Society of Cardiology established the “ESC Patient Forum”…
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Findings from a decade-long study, published in the August 2023 edition of “Transplant International”, offer promise for a significant surge in the availability of lungs for transplant
A study titled “Cytokines Removal During Ex-Vivo Lung Perfusion: Initial Clinical Experience”, by researchers Boffini et al. was published in August 2023 in Transplant International. Covering a period of 10 years, from 2011 to 2020, research by has demonstrated for the first time – on an unparalleled large case series of 54 lung treatments intended…
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“Patient partnership in cardiovascular clinical trials”, European Heart Journal
This paper, titled “”Patient partnership in cardiovascular clinical trials”, published in the European Heart Journal, assesses current initiatives and identifies opportunities for furthering meaningful patient involvement in cardiovascular clinical research. According to the authors, patients are fundamentally the ultimate beneficiaries of medical treatments, and their active engagement as contributors and decision-makers in the product development…
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Patient Perspectives in the French RHU DESTINATION 2024 project on Chronic Thromboembolic Pulmonary Hypertension (CTEPH) Management
RHU DESTINATION 2024 is a hospital and university research funded by the French government. It is led by Prof. Marc Humbert, Director of the French National Pulmonary Hypertension Reference Centre, and coordinated by the Assistance Publique-Hôpitaux de Paris (Bicêtre Hospital). Partners include the University of Paris-Saclay, Inserm, Marie Lannelongue Hospital, as well as three private…
Read MoreIntroducing the innovations in the 2022 pulmonary hypertension treatment algorithm – webinar recording
Attendees at our October 12 webinar had the invaluable opportunity to gain firsthand insights from two global authorities in the field of pulmonary hypertension. These distinguished experts, both co-authors of the 2022 European Society of Cardiology and European Respiratory Society clinical guidelines on pulmonary hypertension, shed light on the updated treatment algorithm outlined in the guidelines.…
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Understanding the Interplay: Pulmonary Hypertension and Mental Well-Being on World Mental Health Day 2023, October 10
Today, on ‘World Mental Health Day’, an international day dedicated to global mental health education, awareness, and advocacy against social stigma, it’s important to recognize the profound impact of conditions like pulmonary hypertension. Beyond the physical limitations, individuals grapple with uncertainty about the future, potential challenges in continuing their careers, the necessity of regular medical…
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It’s today, October 7! The 2023 edition of the European Day for Organ Donation and Transplantation (EDD)
Sponsored by the European Directorate for the Quality of Medicines & HealthCare (EDQM), Council of Europe in a different country every year since 1996, the European Day for Organ Donation and Transplantation (EDD) aims to raise public awareness of the need for organ, tissue and cell donation and promote the principle of voluntary and non-remunerated donation.…
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2023 marks the 40th anniversary of the first successful heart-lung transplant in Europe – on a pulmonary hypertension patient – by legendary thoracic surgeon Prof. Magdi Yacoub
This year marks the 40th anniversary of the first successful heart-lung double transplant for a pulmonary hypertension patient in the United Kingdom by legendary thoracic surgeon Prof. Magdi Yacoub. In the early 1980s, after the successful introduction of the immunosuppressive drug cyclosporin A, Prof. Magdi Yacoub sought to push the boundaries of cardiac surgery. In…
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HTaPFrance Family Weekend for children with pulmonary hypertension held in the beautiful region of Sologne, 28.9-1.10 2023
The French pulmonary hypertension association HtaPFrance has chosen the beautiful region of Sologne for the 2023 edition of the WEEF, Week-End-Enfants-Familles, and in particular the charming “Ferme de Courcimont”. Set in 11 hectares of woods, moorland and ponds, the Ferme de Courcimont is in the heart of the Sologne and less than 2 hours from Paris.…
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Highlights from the European Respiratory Society (ERS) 2023 Congress on the topic of pulmonary hypertension by Prof. Marc Humbert, Director of the French National Pulmonary Hypertension Centre
The European Respiratory Society (ERS) has issued an eight-episode series offering summaries of disease specific content from its annual congress which took place in Milan, Italy, September 20-23, 2023 In one of the episodes, European Respiratory Society (ERS) Past President Prof. Marc Humbert, Director of the French National Pulmonary Hypertension Centre, selects his highlights from…
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“Casper – the Bear with Blue Lips”, a new booklet introducing children 4-10 years of age to pulmonary hypertension
A delightful children’s book titled “Casper – the Bear with Blue Lips” debuted on September 30, 2023, at 11:30 a.m. in Bulgaria’s literary club “Peroto” within the National Palace of Culture (NDK). Authored by Natalia Maeva, an accomplished journalist and (former) patient, President of the Bulgarian Society for Pulmonary Hypertension BSPPH, the book introduces young…
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The lay summary of the European Society of Cardiology and European Respiratory Society clinical guidelines on pulmonary hypertension is now available in 11 languages
Did you know that the lay summary of the European Society of Cardiology and European Respiratory Society clinical guidelines on pulmonary hypertension is now available in 11 languages: English, French, German, Greek, Italian, Polish, Portuguese (Portugal), Russian, Spanish, Romanian, Ukrainian. The English version of the lay summary was developed with the active collaboration of the two…
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U.S.A. Food and Drug Administration (FDA) decision on sotatercept for the treatment of pulmonary arterial hypertension expected end March 2024
Merck (known as MSD outside of the US and Canada), announced on Setpember 28 that that the U.S. Food and Drug Administration (FDA) has accepted to give priority review for sotatercept, Merck’s novel investigational activin signaling inhibitor, for the treatment of adult patients with pulmonary arterial hypertension. The FDA has set a target action date…
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World Lung Day, an annual campaign observed on September 25th to raise awareness about lung health
Today is World Lung Day, an annual campaign observed on September 25th to raise awareness about lung health. In this poignant print, by Italian artist Silvia Braida (https://www.silviabraida.com/), from Udine, in Friuli, the delicate intricacy of thin branches beautifully mirrors the fragility of our lungs. Against a soft beige backdrop, shaped like lungs, it serves…
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Patients take centre stage at the Annual Congress of the European Society for Organ Transplant in Athens, September 17-20, 2023
The annual congress of the ESOT – European Society for Organ Transplantation is the largest and most influential scientific event in the field of transplantation science in the world. This year, patients and their well-being took center stage, with many sessions dedicated to shared decision making, shared care, and patient-related issues. The congress was attended…
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The World Health Organisation (WHO) “World Patient Safety Day” is celebrated annually on September 17
The World Health Organization’s World Patient Safety Day recognises the key role patients, families and caregivers play in the safety of health care. Evidence increasingly shows that when patients become partners in their care, significant gains are made in terms not only of safety, but also patient satisfaction and health outcomes. Pulmonary hypertension patients will see their health…
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“Introduction to Exercise”, a new video series by the Pulmonary Hypertension Association (PHA)
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!…
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Slides and recording of our webinar on “Balancing life and health: pulmonary hypertension, women & family planning” (Sept. 5, 2023) now available!
Download the webinar slides here Transcripts coming soon Listen to the recording (in English) by clicking 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. Warmest thanks to
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New European Lung Foundation (ELF) “Pulmonary Hypertension Patient Advisory Group”, PAG, set up!
The Alliance for Pulmonary Hypertension has been a proud member of the European Lung Foundation (ELF) Patient Organisation Network since May 2023 (see our article at this link). More recently, the European Lung Foundation has set up a new Patient Advisory Group dedicated specifically to pulmonary hypertension. The ELF’s Patient Advisory Groups, also known as…
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Want to find out more about Medicines R & D and Patient Engagement? Check out the EUPATI Toolbox, now available in 14 languages!
“EUPATI” stands for European Patient Academy on Therapeutic Innovation. Its mission is to provide accessible, innovative and inclusive education that empowers patients and patient representatives with the right knowledge, skills and competencies to effectively engage and partner with all other stakeholders in medicines R&D. The EUPATI Toolbox is organised in two main areas: Medicines R&D…
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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…
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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
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The 2023 PHA Canada Research scholarship application process opens September 1, 2023!
PHA Canada’s scholarship program awards up to $10,000 to outstanding trainees in support of their research into the field of pulmonary hypertension. This research program allows emerging pulmonary hypertension researchers—whose projects will contribute to the better understanding or treatment of pulmonary hypertension—to fully delve into their scientific studies, in collaboration with specialized pulmonary hypertension clinics…
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The fascinating story about how the first ever right heart catheterisation was performed by a German physician, Dr. Werner Forssman, on himself!
Right Heart Catheterization (RHC) is the gold standard for diagnosing and classifying pulmonary hypertension. The story behind its invention is captivating, highlighting the remarkable strides that individuals driven by a passion for science and innovation can take, often braving risks to their own well-being and even lives! Werner Forssmann was born in Berlin in 1904,…
Read MorePhase 3 clinical trial to evaluate the safety and efficacy of oral inhalation of seralutinib for pulmonary arterial hypertension due to start in the Fall
The Phase 3, randomized, double-blind, placebo-controlled study PROSERA to evaluate the efficacy and safety of oral Inhalation of seralutinib for the treatment of pulmonary arterial hypertension is on track to start shortly. The primary objective of the study is to determine the effect of seralutinib on improving exercise capacity in subjects with WHO Group 1…
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Embracing Life: Rob’s Journey with familial pulmonary arterial hypertension
This article was originally published in “Papillon”, the magazine of the Dutch Pulmonary Hypertension Association’s, in the first edition of 2023, at pages 8-9. The author is Anita Harte. We extend our heartfelt thanks to Rob for having shared his journey with us. Rob (39) has familial pulmonary arterial hypertension. He is a member of…
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The Pulmonary Hypertension Association UK is conducting a study evaluating a new self-help programme for patients who live with emotional difficulties
Are you currently grappling with pulmonary hypertension and finding that it’s impacting your emotional well-being, possibly leading to feelings of low mood or depression? The Pulmonary Hypertension Association UK has partnered with researchers at the University of Cardiff and Nottingham Trent University to conduct a study evaluating a new self-help programme for pulmonary hypertension patients who live…
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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…
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Interesting articles in new edition of “Advances in PH”, including on mental health, the role of caregivers and the use of wearables in pulmonary hypertension
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…
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New awareness campaign by the European Society for Organ Transplantation (ESOT) provides valuable resources to empower patients and enhance their pre and post-transplant journey
The new awareness campaign by ESOT – European Society for Organ Transplantation is very relevant to our community as, despite the huge progresses made in the past 30 years in the field of pulmonary hypertension (new treatments, better treatment management, new/improved surgical techniques, etc), lung transplantation still remains an important treatment option for patients who…
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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…
Read MoreKEROS Therapeutics announces launch of a Phase 2 trial, TROPOS, to assess the effectiveness of KER-012 as add-on treatment in pulmonary arterial hypertension
Keros Therapeutics has announced that the U.S. Food and Drug Administration (FDA) has cleared its investigational new drug application to conduct a Phase 2 clinical trial of KER-012, TROPOS, in combination with background therapy in patients with pulmonary arterial hypertension. KER-012 KER-012 is designed to normalize blood vessel thickness and heart function in pulmonary hypertension.…
Read MoreUpdate on Merck Phase 2/3 INSIGNIA-PAH clinical trial investigating inhaled treatment MK-5475 in pulmonary arterial hypertension
Merck’s investigational inhaled soluble guanylate cyclase (sGC) stimulator MK-5475 was well-tolerated and showed promise among adults with pulmonary arterial hypertension (PAH) in a Phase 1 clinical trial (see our article on this topic at this link). Merck is sponsoring a Phase 2/3 study. Learn more about the INSIGNIA-PAH trial at this link on the Merck website…
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The Latvian Pulmonary Hypertension Association, Pulmonālās Hipertensijas Biedrība (PHB), launches new information booklet on clinical trials to celebrate its 12th anniversary
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,…
Read MoreEVOLVE, a study by United Therapeutics to evaluate real-world use of next generation pumps for Remodulin is now enrolling
The aim of the EVOLVE study is to observe and assess drug administration activities, time spent on drug administration activities, and patient-reported outcomes (PROs) including quality of life, treatment satisfaction, and patient perception of devices related to use of United Therapeutics Corporation (UTC)-developed next-generation infusion pumps to administer Remodulin in patients with pulmonary arterial hypertension.…
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Lancet publishes ground-breaking three-paper series on pulmonary hypertension, the first of which is co-authored by a patient and patient advocate!
📣 Yesterday, August 14 2023, the The Lancet published a ground-breaking three-paper series on pulmonary hypertension. 1️⃣ In the first paper, Prof. Marc Humbert and colleagues provide an overview of the pathophysiology of pulmonary arterial hypertension, current therapeutic approaches, and emerging treatment options, with a forward-looking discussion of innovative solutions for future clinical trials. We…
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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…
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Celebrating the 12 year anniversary of the Latvian Pulmonary Hypertension Association, Pulmonālās Hipertensijas Biedrība (PHB), and its amazing achievements!
Our warmest congratulations to our friend and colleague Ieva Plume, President of PHA Latvia, Pulmonālās hipertensijas biedrība (PHB), one of the Founding Members of the Alliance for Pulmonary Hypertension, for their 12th anniversary! Twelve years of amazing achievements! Message sent by Ieva Plume “On August 4, 2023, the Latvian Pulmonary Hypertension Association (PHB) celebrated its…
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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…
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Celebrating three months of our pulmonary hypertension knowledge sharing project: grateful for the promising feedback from the community!
On May 5 the “Alliance for Pulmonary Hypertension” (AfPH) launched its knowledge sharing platform (PH-KSP) and announced its knowledge sharing webinar series. Three months later, we are delighted to share the initial and very promising feedback from the community, which inspire us to keep evolving and enhancing the platform. As a dynamic and interactive platform,…
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Slides and recording of our webinar on “Patient-Reported Outcome Measures and Their Role in Pulmonary Hypertension Care & Research” (July 27, 2023) now available!
Download the webinar slides here Transcripts coming soon Listen to the recording (in English) by clicking 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. Warmest thanks to
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Pulmonary hypertension advocate Gergely Meszaros speaks at the Association of Cardiovascular Nursing & Allied Professions (ACNAP)’s annual conference in Edinburgh
Gergely Meszaros, a pulmonary hypertension advocate and Project Manager at the European Reference Network for Rare Lung Diseases, ERN-LUNG, was invited to speak at the Association of Cardiovascular Nursing & Allied Professions (ACNAP) of the European Society of Cardiology Annual Congress in Edinburgh, UK, on June 23-24, 2023. Gergely’s talk was about the 2022 joint European Society…
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Sunday “mixing parties”: a husband’s creative way to prepare his wife’s pulmonary hypertension medications to the beat of their favorite tunes!
Michael is a pulmonary hypertension caregiver from Humble in Texas, USA. He is a caregiver for his wife, who is 42, and was diagnosed in December 2017 with pulmonary arterial hypertension. Along with her pulmonary arterial hypertension diagnosis, she was also diagnosed with Lupus. She is on intravenous therapy with Veletri (epoprostenol). Michael started his…
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Announcing our next webinar on “Balancing life and health: Pulmonary Hypertension, women and family planning”, September 5, 2023 at 18:00 CEST
Pregnancy in pulmonary hypertension is a very sensitive and multifaceted topic. Beyond medical considerations, cultural, religious, and personal beliefs play pivotal roles, adding layers of complexity to the decision-making process. Navigating this delicate journey requires a comprehensive understanding of each individual’s unique circumstances and values. Panelists Karen M. Olsson MD – Department of Respiratory Medicine,…
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Lay summary of the 2022 ESC/ERS clinical guidelines on the diagnosis and treatment of pulmonary hypertension now available in 11 languages!
“Diagnosing and treating pulmonary hypertension – understanding the professional guidelines” is an easy to understand summary of the joint European Society of Cardiology (ESC) and European Respiratory Society (ERS) clinical guidelines for pulmonary hypertension (PH). It was published on the European Lung Foundation (ELF) website on 02/11/2022. It is for people with pulmonary hypertension, or…
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Hall Skaara, a pulmonary hypertension patient from Norway, represents the patient voice and PHA Europe at important Ferrer event
Hall Skaara, who is a pulmonary hypertension patient and has been a Project Manager for PHA Europe since 2017, was invited to represent the patient voice at Ferrer’s recent IMPACHT conference in Barcelona, Spain, together with Steve Jones from the European Pulmonary Fibrosis Federation (EU-PFF). “It was the fifth time Ferrer ran the conference and more than 150 pulmonologists…
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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…
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New seven-part informational video series on treating and managing pulmonary hypertension published by the Pulmonary Hypertension Association (PHA)
The Pulmonary Hypertension Association (PHA) has just share its latest series of informational videos on treating and managing pulmonary hypertension, featuring J. Wesley McConnell, M.D., director of the Norton Healthcare Pulmonary Hypertension Clinic in Louisville, Kentucky. In this seven-part video series, Dr. McConnell provides an overview of managing a PH diagnosis and the various treatment…
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Proud that the Alliance for Pulmonary Hypertension has been awarded a 2023 #RAREis Global Advocate Grant by Horizon Therapeutics!
We are proud to have been awarded a 2023 #RAREis Global Advocate Grant by Horizon Therapeutics’ #RAREis program, which recognizes contributions to advancing, educating and addressing the needs of the rare disease community. We look forward to continuing to make a meaningful difference for those affected by pulmonary hypertension! The 2023 #RAREis Global Advocate Grant program was announced in February 2023…
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Slides, recording and transcript (in several languages) of our webinar on “Patients as Partners and Shared Decision Making” (June 6), 2023 now available!
Download the webinar slides here Download the full transcript in English – Dutch – German – Turkish. New language versions in Italian, French and Spanish coming soon. Other languages available on request Listen to the recording (in English) by clicking here Learning objectives of the webinar Our goal is to empower individuals living with pulmonary…
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Connecting and empowering the pulmonary hypertension community through newsletter exchange
As dedicated volunteers for our pulmonary hypertension patient associations, we understand the immense effort involved in crafting a newsletter. It goes beyond just creating content, which requires extensive research and writing, but also involves sourcing the right photos, designing an attractive layout, printing, and distribution. Newsletters serve as a fantastic way to stay connected with…
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Discover the excellent educational webinar series recordings by the Pulmonary Hypertension Association Canada, PHA Canada 🎥
PHA Canada has conducted four webinars so far this year. Watch these and past webinar recordings at this link on the PHA Canada website.
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Understanding right heart catheterisation, the “gold standard” test to diagnose pulmonary hypertension: a new resource by the UK Pulmonary Hypertension Association, PHA UK
The PHA UK has added new information to their website area that’s dedicated to right heart catheterisation procedure, check it out at this link. Cardiac catheterisation is known as the ‘gold standard’ test to diagnose pulmonary hypertension. It is a procedure that is used to study the right side of the heart and it is…
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“We want to see your pump bags”: the UK Pulmonary Hypertension Association, PHA UK, invites patients on IV medication to share photos of how they wear their pump!
IFinding a way for pulmonary hypertension to carry their pump for IV medication in a way that works for them is important. The PHA UK invites patients who have found the “perfect bag”, or maybe even a home made one, to send a photo so they can share it to inspire others. Reply to media@phauk.org…
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Findings of UK Pulmonary Hypertension Association, PHA UK, survey to investigate how patients and caregivers feel about their clinical data being accessed by researchers are now available
The PHA UK’s survey, launched in June 2023, aimed at understanding patient and caregivers’ thoughts about their clinical data (health records) being accessed as part of a study. A total of 331 persons responded to the survey. The findings have now been published and are available at this link on the PHA UK website.
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Caring for a child with Paediatric Pulmonary Hypertension, recording of the live webinar organised by the Pulmonary Hypertension Association (PHA) on June 22 now available
The recording of the webinar organised by the Pulmonary Hypertension Association (PHA) on June 22, 2023 is now available at this link on the PHA YouTube channel. The webinar featured Pediatric Pulmonary Hypertension experts, Rachel Sullivan, M.D., and Melissa Magness, M.S.N., APRN, CNP-AC and parents, Jayna Wall and Jeff Harpp. The panel shared an overview…
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Traveling with pulmonary hypertension: useful advice from the Pulmonary Hypertension Association (PHA)
Don’t let a diagnosis of pulmonary hypertension make you think that your travel days are over! Traveling is still possible with some additional planning. Check out the PHA’s dedicated website section to gain insights on what factors to consider during your travels. The PHA page includes advice on different forms of travel: Learn more at…
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The UK Pulmonary Hypertension Association (PHA UK)’s new trial will test effectiveness of self-help programme for pulmonary hypertension patients with depression
The PHA UK has partnered with psychology researchers from Cardiff University and Nottingham Trent University to conduct a study on a new self-help program for individuals with pulmonary hypertension to manage depression. The study aims to test the effectiveness of a series of self-help booklets and eventually make the program widely available. Learn more at…
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Results of study investigating effects of nutrition and lifestyle interventions in pulmonary arterial hypertension patients published in “Pulmonary circulation”
A recent study published in Pulmonary Circulation demonstrated the effectiveness of a newly developed video e-learning tool in improving nutrition and quality of life for pulmonary arterial hypertension (PAH) patients. Conducted at a single center in Amsterdam, the study found that the use of e-learning modules on nutrition offered a unique opportunity to positively influence…
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The Alliance For Pulmonary Hypertension Welcomes Two New Full Members And One New Associate Member!
The Alliance for Pulmonary Hypertension held its Annual General Assembly on June 15, 2023. At this meeting the Members discussed and approved the membership applications of the following associations: AIPI, Associazione Ipertensione Polmonare Italiana OdV (Italian Pulmonary Hypertension Association), President Ms Pisana Ferrari – FULL MEMBER Stichting Pulmonale Hypertensie (Dutch Pulmonary Hypertension Association), President Ms…
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Coming up on July 27: the AfPH webinar on “Patient reported Outcome Measures in Pulmonary Hypertension Research and Care”
The AfPH’s second webinar in the six part series exploring the innovations introduced by the 2022 ESC/ERS clinical guidelines on pulmonary hypertension is coming up soon, on July 27! Patient-Reported Outcome Measures (PROMs) are currently underused in the context of pulmonary hypertension. While their importance in capturing the patient perspective and improving patient care is…
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Janssen submits marketing application to the European Medicines Agency (EMA) for single tablet macitentan and tadalafil (STCT) pulmonary arterial hypertension therapy
On June 26, Janssen filed a marketing authorization application with the European Medicines Agency (EMA) to seek approval for a single tablet combination therapy (STCT) containing macitentan and tadalafil, intended for the treatment of pulmonary arterial hypertension. Macitentan 10 mg and tadalafil 40 mg STCT is a therapy that combines the Endothelin Receptor Antagonist (ERA)…
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The International Respiratory Coalition (IRC) launches it official Manifesto for Better Respiratory Health at its Summit on 26-27 June 2023
The International Respiratory Coalition (IRC) is a coalition of respiratory clinicians and professional societies, including the European Respiratory Society (ERS) and European Lung Foundation (ELF), patients and industry partners was launched in September 2021. The second IRC Summit took place in Lisbon, Portugal on 26–27 June 2023. The event was an important opportunity for representatives…
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Sharing best practices on how to implement shared decision making and support patient empowerment: Prof. Marc Humbert, Head of the French Pulmonary Hypertension National Referral network
In our ongoing efforts to advance the understanding and treatment of pulmonary hypertension, the Pulmonary Hypertension Knowledge Sharing initiative places a strong emphasis on sharing best practices. We are deeply grateful to Prof. Marc Humbert for graciously accepting our invitation to shed light on the crucial topic of shared decision making and patient empowerment within…
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Full transcript of the June 6, 2023 AfPH webinar of “Partnering with Patients and Shared Decision Making: A New Paradigm in Pulmonary Hypertension Care?” now available
You can also download the slides, recording and text of transcript in pdf format in several languages at this link on the PH-KSP. TRANSCRIPT “PARTNERING WITH PATIENTS AND SHARED DECISION MAKING: A NEW PARADIGM FOR PULMONARY HYPERTENSION CARE”, June 6, 2023 DR. ANDREAS REIMANN, MODERATOR Good day, and greetings, wherever you may be joining from.…
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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…
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The summer is here, at least in some parts of the globe! Here are some tips for patients on how to cope with high temperatures and exposure to sun
HTaPFrance HTaPFrance has just issued its indications on how to cope with warm weather when you have pulmonary hypertension. It recommends great caution as heat and sun can be dangerous. Read more on the HTaPFrance website at this link PHA The PHA offers supplementary recommendations for effectively managing pulmonary hypertension medication in warm weather conditions.…
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Catch Up on Last Week’s PH News – June 12-18, 2023
The recording, slides and full transcript of the AfPH webinar on Patients as Partners and Shared Decision Making now available at this link You can request a translation of the transcript by contacting us via this form Find out more about a very successful French campaign to promote organ donation with young people at this…
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Gathering Strength and Expertise: HTaPFrance’s Annual Meeting Unites Patients, Families, and Scientific Experts on June 10th
This year the HTaPFrance’s Annual General Assembly was held on the 10th of June via video conference, bringing together approximately 45 people. he association operates thanks to two employees and of course volunteers who dedicated 1 093 hours of volunteer work in 2022. These volunteer hours are valued in the accounts and represent €12,339, or 0.7 full-time equivalent. HTaPFrance keeps track of volunteer hours, because…
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AIPI, Italian pulmonary hypertension association annual meeting with patients and families, Bologna, June 11, 2023
The long-awaited traditional AIPI meeting with patients and their families finally took place on June 11, 2023, marking a joyful reunion for patients and their family members after the challenging period of COVID-19 restrictions. The meeting kicked off with a presentation by the President, Pisana Ferrari, about the various activities and initiatives undertaken by the…
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Launch of “Lez Zorganes”, a French TikTok cartoon video campaign to promote organ donation among young people
A 2023 survey by the French Agence de la Biomédecine (Agency for Biomedicine) has found that 79% of 16-24 year-olds felt uninformed about organ donation. To address this, a new digital campaign has been launched, targeting young people in a lighthearted and engaging manner to provide information about organ donation without the heaviness typically associated…
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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)…
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“My PH Family”, an organisation with a mission to provide support and resources to families of children with pulmonary Hypertension
The founders of “My PH Family” believe that educating children and families about pulmonary hypertension in a fun and engaging way can help alleviate some of the anxiety associated with the diagnosis. This is why they have created the Kiki the Koala series which provides easy-to-understand information about the condition and offers advice on living…
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Noteworthy PH Moments: Highlights from June 5 to 11, 2023
Take a moment to check out the latest updates in the PH-KSP’s “News” section: 🤝 Recording and slides of the AfPH live webinar on “Partnering with patients and shared decision making in PH care” now available Link 📋 PHA UK launches survey to investigate how patients feel about their clinical data being accessed by researchers…
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The Afph’s first webinar on “Partnering with patients and shared decision making in PH care”, June 6 2023
We are delighted that around 50 people attended our webinar live across all 3 platforms (LInkedIn, Facebook and YouTube) and that the event has received 100s of views in the following days. We had good engagement from the audience and we are looking forward to the next event! We take the occasion to warmly thank…
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“Artificial intelligence in healthcare and education”, BDJ, May 26, 2023
“AI has the potential to bring about positive changes in healthcare and to empower patients by providing them with more control over their health”, reads an article in the BDJ published on May 26, 2023, which, interestingly, was entirely written by Chat GPT, an AI conversation tool developed by Open AI! Manas Dave and Neil Patel,…
Read MoreAerami Therapeutics prepares for initiation of uniPHied, a Phase 2 study trial of AER-901, inhaled imatinib, in pulmonary arterial hypertension (PAH) and pulmonary hypertension associated with interstitial lung disease (PH-ILD), June 1, 2023
Aerami Therapeutics has announced new additions to its management team as the company prepares for the imminent initiation of the planned “uniPHied” Phase 2 trial of AER-901 (inhaled imatinib), in pulmonary hypertension associated with interstitial lung disease (PH-ILD) and pulmonary arterial hypertension (PAH). AER-901 is a drug-device combination delivered via a high-performance, handheld nebulizer that…
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“Narrative Medicine Teaches Doctors How to Listen to Patients’ Stories”, Eve Glasberg, Columbia University News, June 5, 2023
Eve Glasberg is the Director of Arts and Culture Communications at Columbia University, NY, NY. In a recent article for the Columbia University News, she writes about the growing field of “narrative medicine”, a discipline which is at the intersection of humanities, the arts, clinical practice, and health care justice, and aims to improve clinician-patient…
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The US Pulmonary Hypertension Association, PHA, calls on the community to support legislation that would limit step-therapy requirements
Sharing from the PHA’s Instagram page the news that that the “Safe Step Act” is moving to the US Senate floor for the first time and aims to limit step-therapy requirements. Current insurance policies in US require people to try less expensive treatments than what their doctors prescribe first. The PHA points out that for…
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It’s tomorrow! The AfPH’s first webinar on Partnering with Patients and Shared Decision-Making in Pulmonary hypertension care is on June 6, 16.30 CEST
Here are the links to join: If you wish to join all you need to do is go to any of these links at 4.30 pm CEST on June 6. LinkedIn https://www.linkedin.com/events/7062051293736898560/comments/ Facebook Live https://www.facebook.com/events/1015166536534693 YouTube https://www.youtube.com/watch?v=x6wJlY9Kz_o PH-KSP website https://ph-ksp.com/our-webinars/ The recording, slides and transcript will be made available shortly after the webinar. Translations of the transcript will be…
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Recording now available for the PHA Europe webinar with Prof. Sean Gaine, May 4, 2023, on “Work in progress: Emerging hope in PH”
On the occasion of World Pulmonary Hypertension Day PHA Europe organised a live webinar with Prof. Sean Gaine, titled «Work in Progress: Emerging Hope in PH». on May 4th at 7 pm CET. Prof. Sean Gaine is Consultant Respiratory Physician at Mater Misericordiae University Hospital in Dublin, Ireland, and director of the National Pulmonary Hypertension…
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Last Week’s Key PH Moments You Don’t Want to Miss! May 29- June 4, 2023
Two chronic thromboembolic pulmonary hypertension (CTEPH) patients, Gabriele and Rishabh, from different corners of the globe, respectively Italy and Singapore, have come forward to share their remarkable stories of resilience, strength, and hope. “My Journey with Chronic Thromboembolic Pulmonary Hypertension (CTEPH)”, Gabriele Valentini, May 29, 2023 “From Diagnosis of CTEPH to Triumph: Rishabh’s Journey of…
Read MoreCurrently enrolling: ARTISAN Phase 4 study to assess effect of early and rapid treprostinil therapy in mean pulmonary artery pressure (mPAP) reduction and reverse right ventricle remodeling in pulmonary arterial hypertension patients
ARTISAN (Afterload Reduction To Improve Right Ventricular Structure And Function) is a Phase 4, Prospective, Multi-center, Single-Arm Study to assess the effect of early and rapid treprostinil therapy to reduce mean pulmonary artery pressure (mPAP, improve right ventricular (RV) function, and reverse RV remodeling, in patients with pulmonary arterial hypertension (PAH). Estimated enrolment is 50…
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“From Diagnosis of CTEPH to Triumph: Rishabh’s Journey of Resilience and Restoration”, May 31, 2023
Author: Pisana Ferrari, May 25, 2023, based on interview Introduction In the past few decades, significant strides have been made in the field of chronic thromboembolic pulmonary hypertension (CTEPH), encompassing enhanced disease comprehension, innovative therapies and surgical advancements. However, living with CTEPH continues to pose physical, practical, emotional, and social challenges for patients, families, and…
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Janssen Submits New Drug Application to U.S. FDA Seeking Approval of Investigational Single Tablet Combination Therapy of Macitentan and Tadalafil for Treatment of Patients with Pulmonary Arterial Hypertension (PAH), May 30, 2023
Today, the Janssen Pharmaceutical Companies of Johnson & Johnson have announced the submission of a New Drug Application (NDA) to the U.S. Food and Drug Administration (FDA). The application seeks approval for an investigational single tablet combination therapy of macitentan 10mg and tadalafil 40mg (M/T STCT) as a long-term treatment option for pulmonary arterial hypertension…
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