“My Journey with Chronic Thromboembolic Pulmonary Hypertension (CTEPH)”, Gabriele Valentini, May 27, 2023
Gabriele, a 47-year-old Italian national residing in Brescia, bravely opens up about his personal journey with Chronic Thromboembolic Pulmonary Hypertension (CTEPH), aiming to raise crucial awareness within the pulmonary hypertension community. By sharing his experience, he hopes to shed light on this condition and its impact, offering support and insights to those who may be…
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Exploring Geographic Barriers to Care Access for Patients With Pulmonary Arterial Hypertension in the US, a study presented at the American Thoracic Society (ATS) Annual Congress, May 19-24, 2023
A recent article in Drug Topics, reports on the findings of a study presented at the 2023 American Thoracic Society International Conference, held from May 19 to 24 in Washington, DC, which reveals that the majority of patients with pulmonary arterial hypertension (PAH) live in an area that has a shortage of health care professionals,…
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A Reunion of Gratitude and Friendship: Six Long-term Lung Transplant Recipients Reconnect and Celebrate at Countryside Retreat
From left: Monica, 12 years post double lung transplant; Pisana, 21 years; Samantha, 19 years; Meri, 18 years; Alessandro, 20 years; Veronica, 19 years. In the middle stands Erna, a remarkable woman who provided unwavering support to us and our families during our time in Vienna, both before and after our life-changing surgeries. All of…
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Zambon Pharma completes enrolment in Phase 3 clinical trial evaluating new inhaled treatment for the treatment of Bronchiolitis Obliterans Syndrome (BOS) following single or double lung transplant, May 1, 2023
Zambon, a multinational pharmaceutical company, announced today that it has completed enrollment in its two pivotal Phase 3 studies. The trials are designed to evaluate the safety and efficacy of Liposomal Cyclosporine A for Inhalation (L-CsA-i) for the treatment of BOS in adults following single lung (BOSTON-1) or double lung (BOSTON-2) transplantation. BOS is a…
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Final call for the UK Pulmonary Hypertension Association (PHA UK), survey to understand more about nutrition and pulmonary hypertension
PHA UK’s is the first survey ever conducted about pulmonary hypertension and nutrition in the UK. As part of PHA UK’s work to help people enjoy a better quality of life with pulmonary hypertension, they would like to explore more about the role of nutrition and the difference it can make in this disease area.…
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The recording of the recent informative webinar on pulmonary hypertension and nutrition, organized by the ANHP (Asociación Nacional de Hipertensión Pulmonar), is now accessible
On 13 April 2023 the Asociación Nacional de Hipertensión Pulmonar, Spanish pulmonary hypertesion association, hosted a webinar titled “Pulmonary hypertension and nutrition: can diet help in the treatment of PH?”, featuring as speaker Ms Marina Sisso, a dietician and clinical nutritionist at the Hospital Clínic de Barcelona, specialised in the area of Pulmonology and Cardiology.…
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Kamil Hamidullah, a double lung transplant recipient with a history of familial pulmonary hypertension, interviewed by the BirGün online magazine
“Don’t Underestimate It: Pulmonary Hypertension Can Be Fatal”. Published on May 1, 2023, in BirGün, this interview sheds light on the critical nature of pulmonary hypertension, featuring Kamil Hamidullah, a patient from Turkey. Kamil, also serving as the President of the Turkish pulmonary hypertension association PAHSSc, emphasizes the severity of this condition and the urgent need…
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The Alliance for Pulmonary Hypertension (AfPH) has become a member of the European Lung Foundation (ELF) Patient Organisation Network
We are delighted to announce that the Alliance for Pulmonary Hypertension (AfPH) has become a member of the European Lung Foundation (ELF) Patient Organisation Network, which includes more than 200 respiratory organisations across Europe and beyond, working together with people living with over 40 different lung conditions, including pulmonary hypertension. The European Lung Foundation (ELF)…
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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…
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This week is “European Mental Health Week”. Take a moment to explore the resources available on this platform to help patients navigate the challenges of living with pulmonary hypertension
European Mental Health Week is a pan-European initiative that aims to raise awareness about the importance of mental health in our everyday lives. Set up and run by Europe’s largest independent mental health NGO Mental Health Europe (MHE), the fourth edition will take place from 22 May until 28 May 2023. Pulmonary hypertension has a significant impact on the lives…
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May 20 is “International Clinical Trials Day”, a day to raise awareness about clinical trials and their contribution to public health
The International Clinical Trials Day is organised yearly on May 20, since 2014, by the Association of Clinical Research Professionals (ACRP), as an opportunity for the clinical research community to to celebrate what has been accomplished in this field and recommit to push even further. Learn more about International Clinical Trials Day at this link…
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Driving license grants for pulmonary hypertension patients in the UK
The UK Pulmonary Hypertension Association, PHA UK, regularly provides information to patients about possible benefits they can apply for. Today on Instagram the PHA UK published information about grants for driving licences awarded via the Motability Scheme. Being able to drive is an important way for patients to be autonomous and this is a very…
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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…
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Pulmonary endarterectomy (PEA) Leads to Long-term QOL Improvement in People With CTEPH, study suggests, American Journal of Managed Care
Pulmonary endarterectomy (PEA) is the recommended first-line treatment for patients with chronic thromboembolic pulmonary hypertension (CTEPH), if they qualify for the procedure. Alternative therapies include balloon pulmonary angioplasty (BPA) or medical therapy. An article by Jared Kaltwasser for the American Journal of Managed Care, dated April 17, 2023, presents the results of a Swedish single…
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On May 12 Team PHenomenal Hope announced its inaugural symposium, PHenomenal Hope 2023: Knowledge, Research & Advocacy in Pulmonary Hypertension, due to take place in Boston on December 15, 2023
Team PHenomenal Hope, a US national nonprofit advocacy organization for pulmonary hyeprtrension, proudly unveiled its inaugural symposium, PHenomenal Hope 2023: Knowledge, Research & Advocacy in pulmonary hypertension on May 12, 2023. The symposium will be held on Friday, December 15, 2023, in Boston, Massachusetts, USA Experts in the field are invited to share original research by August…
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Findings of a recent study published in Thorax (BMJ Journals) highlights the importance of integrating pulmonary arterial hypertension patients’ perceptions in the elaboration of clinical trials – May 4, 2023
The aim of this study was to investigate the value given by patients’ and caregivers’ to components of composite outcomes in pulmonary arterial hypertension (PAH) clinical trials. There were 335 participants, of which 257 were patients with pulmonary arterial hypertension. The study findings revealed that most outcomes were considered of major or mild-to-moderate importance to…
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The Pulmonary Hypertension Association of Canada, PHA Canada, invites you to celebrate15 years of inspiration at this year’s National Community Conference, June 9-10, 2023
Warmest congratulations to PHA Canada for its 15th anniversary! Check out their anniversary video on YouTube In English at this link in French at this link PHA Canada’s National PH Community Conference is coming up soon, on June 9-10, in Ottawa. Select conference sessions will be made available via Zoom. Here is the link to…
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HTaPFrance, the French pulmonary hypertension association is taking part in a run in Lyon to raise funds for a booklet for teachers to facilitate the inclusion of children with pulmonary hypertension in school – June 25, 2023
Thanks to the enthusiasm of one of its members, HTaPFrance will participate in the Lyon Heroes’ Race (Course des Héros) taking place on Sunday June 25, 2023, in the Parc de Gerland in Lyon. Participants can either run or walk (8 km race, 5 km walk and 2 km discovery course). The aim is to…
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Save the date for AfPH’s webinar on Partnering with Patients and Shared Decision Making, June 6, 2023!
As part of the Alliance for Pulmonary Hypertension (AfPH) knowledge-sharing initiative, a webinar series has been developed in partnership with Prof. Marc Humbert, a leading world expert on pulmonary hypertension and Director of the French National Pulmonary Hypertension Reference Center. Six live events are planned for 2023 and will address the main innovations introduced by…
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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…
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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…
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“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…
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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…
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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…
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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…
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Now recruiting: IMPAHCT, a Phase 2b/3 study investigating a potential new medication, AV-101, developed by aerovate therapeutics, for patients with pulmonary arterial hypertension
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…
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“Work in progress: Emerging hope in PH”, a live webinar organised by PHA Europe with Prof. Sean Gaine as guest speaker on May 4, 2023
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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Coming up on May 14, the Vestingloop 2023, a sporting event to raise awareness and funds for pulmonary hypertension taking place in ‘s-Hertogenbosch, Netherlands
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…
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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,…
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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,…
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A new 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
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
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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…
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On April 20 the Pulmonary Vascular Research Institute (PVRI) launched a survey about access to pulmonary hypertension education, diagnosis and care. Deadline is May 11, 2023
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. Thea deadline is 11 May 2023. The results will be used to develop action plans to help address local needs, mainly in the education, diagnosis, and treatment of…
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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…
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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…
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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…
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“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…
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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”.…
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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.…
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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…
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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…
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Interview with Eva Otter, 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…
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“The value of learning how to live in the moment with pulmonary hypertension”, by Jen Cueva, Pulmonary Hypertension News, March 29, 2023
Jen Cueva is both a pulmonary hypertension patient and a nurse by training, which gives her unique insights into the condition and on how it affects day to day life. Writing for the latest edition of Pulmonary Hypertension News, she explains how living in the present moment has done wonders for her well-being. Instead of…
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Understanding more about the role of artificial intelligence in the diagnosis and management of pulmonary hypertension, a video developed by the UK Pulmonary Hypertension Association (PHA UK), March 28, 2023
The UK Pulmonary Hypertension Association (PHA UK) asked the community what they wanted to know about how artificial intelligence might affect diagnosis and management of pulmonary hypertension, and then put their questions to Dr Andy Swift, a Cardiothoracic Radiologist working with the Sheffield Pulmonary Vascular Disease Unit. Here is the link to the video
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“European Society of Cardiology quality indicators for the care and outcomes of adults with pulmonary arterial hypertension”, European Journal of Heart failure, March 16, 2023
The “European Society of Cardiology quality indicators for the care and outcomes of adults with pulmonary arterial hypertension” were published on the European Journal of Heart Failure on March16, 2023. The indicators may be used to quantify and improve adherence to guideline-recommended clinical practice and improve patient outcomes. Quoting Gergely Meszaros, pulmonary hypertension patient advocate…
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Report by Mélanie Gallant-Dewavrin on the French pulmonary hypertension association (HTaPFrance)’s 5th Patient Congress, March 14, 2023
HTaPFrance held its 5th Pulmonary Hypertension Patient Conference from March 10-12, 2023, in Valpré-Lyon. The Conference, which takes place every 3 years, was delayed because of the pandemic, and all the participants were therefore delighted to be able to come together again. The strikes in France made it a bit more complicated for some speakers…
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Can self-compassion help us better understand the impact of pulmonary hypertension on those with the condition and their carers? A cross-sectional analysis, Pulmonary Circulation, March 6, 2023
A study titled “Can self-compassion help us better understand the impact of pulmonary hypertension on those with the condition and their carers? A cross-sectional analysis” was recently published on Pulmonary Circulation. It was conducted on adults with pulmonary hypertension (n = 65) and caregivers (n = 29), who completed self-report measures on demographic and clinical factors, anxiety, depression, self-compassion,…
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How useful can the new AI “ChatGPT” be in health care? And how trustworthy? Forbes explores its potential uses in healthcare in an article published on March 2, 2023
Commentary by Pisana Ferrari There is a huge amount of hype at the present moment around “ChatGPT”, a natural language processing model developed by OpenAI. ChatGPT interacts in a conversational way and replies to questions from users by tapping into the gigantic amounts of data, vocabulary and information that has been “fed” into it by…
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Interview with the President of AIPI, Italian pulmonary hypertension association for “Italian Medical News”, March 1, 2023, on the role of patient associations
In this interview for Italian Medical News, Pisana Ferrari, President of AIPI, Associazione Ipertensione Polmonare Italiana describes: Full text of article, published March 1st, at this link on the Italian Medical News website
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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…
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European Rare Disease Organisation, EURORDIS, “Black Pearl” annual awards, including for Best Photo, announced on February 21, 2023
Taking place in February to mark the occasion of Rare Disease Day, the EURORDIS (European Organisation for Rare Diseases) Black Pearl Awards celebrates the inspirational qualities of people living with a rare disease along with those who go that extra mile to make a difference to their lives. The black pearl symbolises these unique individuals,…
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Infographic with brief history of pulmonary hypertension science, by Pisana Ferrari
A translated version of this infographic in other languages is available on request. Please use the Contact form Alternatively you can download the WORD version below. The opinions expressed in this article are those of the author only and do not necessarily reflect the views or positions of any entities they represent, or of the…
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World renowned pulmonary hypertension expert Prof. Marc Humbert elected Dean of the Paris-Saclay (FR) Faculty of Medicine, February 15, 2023
The members of the Faculty Council unanimously elected on Wednesday 15 February 2023Prof. Marc Humbert as Director of the Faculty of Medicine. This election follows the departure of Prof. Didier Samuel, who was appointed President and CEO of Inserm on 1 February 2023. Professor of Pneumology at the University of Paris-Saclay, Marc Humbert is Director…
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The Pulmonary Hypertension Association, PHA, is accepting applications for its new grant to support junior pulmonary hypertension researchers. Applications are due March 20, 2023
This research award grants up to $65,000 for one year and supports junior pulmonary hypertension scientists. Proposals must be pulmonary hypertension related research projects that have been favourably reviewed for a National Institutes of Health Early Career Award (K award) but not funded. The award provides bridge funding so the project can generate sufficient preliminary…
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Supervised pulmonary hypertension exercise rehabilitation (SPHERe) clinical trial recruitment
The aim of the SPHERe study is to test the clinical and cost-effectiveness of a supervised exercise rehabilitation intervention with psychosocial support compared to best practice usual care for people with pulmonary hypertension in the community/outpatient setting. The SPHERe study is the first multi-centre clinical randomised controlled trial (RCT) to assess the clinical and cost…
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Mapping the main stakeholders in pulmonary hypertension care, a brief summary by Pisana Ferrari
The main stakeholders in pulmonary hypertension care, brief summary by Pisana Ferrari The following is a concise overview of key stakeholders in the field of pulmonary hypertension care at a European and international level. This list serves as a starting point and will be regularly updated to reflect the evolving landscape and input from the…
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“The ‘Ten Commandments’ of the 2022 ESC/ERS Guidelines for the diagnosis and treatment of pulmonary hypertension”, European Heart Journal, February 1, 2023
An interesting summary of the key ten take home messages of the ESC/ERS clinical guidelines for the diagnosis and treatment of pulmonary hypertension by six members of the Task Force who developed them (2020-2022). Features a useful infographic. Collaboration with patient associations is recommended in commandment n°10! A pdf version of the article can be…
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In his speech at the CPLF, French Language Pulmonology Congress, Prof. Marc Humbert highlights the importance of expert center–patient association partnerships
The Congrès de Pneumologie de Langue Française (CPLF) is the 3rd largest world pulmonology congress, after the ATS (American Thoracic Society) and the ERS (European Respiratory Society). This year it was held from 27 to 29 January 2023 in the city of Marseille. Prof. Marc HUMBERT, President of the European Respiratory Society, coordinator of RespiFIL,…
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A video posted on Instagram explains how pulmonary circulation works in a very unusual, creative way, January 27, 2023
The video, posted by mukuls_pharmacology, an educational Instagram account, shows how blood flows through the heart into the lungs (persons dressed in blue) and then back from the lungs, after being enriched with oxygen (persons dressed in red), into the body. Interesting! See video at this link “POUMONS” means “LUNGS” in English
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Jen Cueva, a pulmonary hypertension patient and former nurse, talks about the benefits of clinical trials in a recent article for “Pulmonary hypertension News”, January 25, 2023
Commentary by Pisana Ferrari Jen Cueva works part time as a columnist for Pulmonary Hypertension News and as a co-moderator of the PH News Forums. As a pulmonary hypertension patient with a nursing background she has gained unique insights into life with the disease and its challenges. Her mission is to help others become more informed and educated so…
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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…
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Youth involvement in patient organisations, an online survey by the European Patients Forum (EPF)
With this survey the EPF Youth Group (YG) of the European Patients Forum (EPF) aims to collect key information on the importance and impact of young patient’s involvement in patient organisations. It is not always easy to involve young patients in patient organisations, as many of us who run patient associations well know. We hope this survey…
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“Is Organ Transplant equal for everyone?” Guest article by Devi Mey, CEO, and Luciano Potena, President, European Society for Organ Transplantation (ESOT), December 15, 2022
In a recent article for the European Public Health Alliance (EPHA) website guest authors Devi Mey, CEO, and Luciano Potena, President, of the European Society for Organ Transplant (ESOT), point out that gender, socioeconomic status, ethnicity, place of residence, level of health literacy, patient awareness, and inadequate training of healthcare providers (HCP) all exert a…
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Gossamer Bio announces seralutinib meets primary endpoint in phase 2 TORREY study in pulmonary arterial hypertension, December 6, 2022
On December 6, 2022, Gossamer Bio, Inc. announced topline results for the TORREY Phase 2 study of seralutinib in patients with pulmonary arterial hypertension. Seralutinib is a tyrosine kinase inhibitor targeting PDGFRα/β, CSF1R, and c-KIT, specifically designed to be delivered via dry powder inhaler for the treatment of pulmonary hypertension. Read more about the TORREY…
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“The evolving landscape of pulmonary arterial hypertension clinical trials”, The Lancet, 26 November–2 December 2022
This article is not freely available but a pdf version can be purchased on the Lancet web page at this link A summary of the article is provided which explains that pulmonary arterial hypertension trial design has shifted from short-term sub-maximal exercise capacity as a primary endpoint, to larger clinical event-driven trial outcomes. Event-driven pulmonary…
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Want to find out more about sotatercept, a potential new pulmonary arterial hypertension treatment? Check out this interview with Dr. Mark Tushner, care of the Pulmonary Hypertension Association UK (PHA UK), November 2022
the Pulmonary Hypertension Association UK (PHA UK) has recently posted a very informative interview with Dr Mark Toshner, pulmonary hypertension Specialist and Associate Professor, about sotatercept, a promising new pulmonary arterial hypertension drug (results for the STELLAR study were announced recently) which is the first to target the root cause of the disease. The video…
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Lay summary of the 2022 ESC/ERS clinical guidelines on the diagnosis and treatment of pulmonary hypertension, November 2, 2023
“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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“Balloon pulmonary angioplasty versus riociguat for the treatment of inoperable chronic thromboembolic pulmonary hypertension (RACE): a multicentre, phase 3, open-label, randomised controlled trial and ancillary follow-up study”, The Lancet, October 2022
RACE is a (completed) phase 3, multicentre, open-label, parallel-group, randomised controlled trial done in 23 French centres of expertise for pulmonary hypertension enrolling treatment-naive patients aged 18–80 years with newly diagnosed, inoperable chronic thromboembolic pulmonary hypertension and pulmonary vascular resistance of more than 320 dyn·s/cm5. A summary of the article is available on The Lancet…
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“Why patient empowerment should be at the heart of organ transplantation: a personal perspective”, by Pisana Ferrari, in Hospital Health Care Europe, October 18, 2022
The European Society for Organ Transplantation (ESOT) invited Pisana Ferrari to share her personal perspective as a lung transplant patient on the importance of patient engagement throughout the transplant journey (20+ years) and on why strengthening the relationship between the patient and the healthcare professional is so crucial in enhancing the transplant patient experience. The…
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First therapy to treat transplant patients with post-transplant lymphoproliferative disease approved for marketing authorisation by the European Medicines Agency (EMA), October 14, 2022
On October 14, 2022, the European Medicines Agency (EMA) announced that it has recommended a marketing authorisation in the EU for Ebvallo (tabelecleucel), a medicine used to treat adults and children from 2 years of age who, after receiving an organ, or a bone marrow-transplantation, develop a blood cancer called Epstein-Barr virus positive post-transplant lymphoproliferative disease…
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Positive results from Phase 3 STELLAR trial evaluating Sotatercept for the treatment of Adults with Pulmonary Arterial Hypertension, October 14, 2022
On October 10, 2022 MERCK released the results from the pivotal Phase 3 STELLAR trial evaluating the safety and efficacy of sotatercept, an investigational activin receptor type IIA-Fc (ActRIIA-Fc) fusion protein being evaluated as an add-on to stable background therapy for the treatment of pulmonary arterial hypertension (PAH) (WHO Group 1). Read more about the…
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Latest edition of the Council of Europe EDQM’s annual “Newsletter Transplant” just been published
The latest edition of the the Council of Europe EDQM’s annual “Newsletter Transplant” has just been published. It provides comprehensive information and data on donation and transplantation activities in 2021 from 79 countries worldwide. This report is the international reference in monitoring practice in donation and transplantation of substances of human origin. It is produced thanks…
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The 2022 “Clinical Guidelines for the diagnosis and treatment of pulmonary hypertension” by the European Society of Cardiology (ESC) and European Respiratory Society (ERS)
The work of two years of the Task Force in charge of the new European Society of Cardiology (ESC) and European Respiratory Society (ERS) joint Clinical Guidelines for the diagnosis and treatment of pulmonary hypertension has finally come to an end. The new guidelines were officially presented yesterday at the ESC Annual Congress in Barcelona…
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“What’s new in the 2022 ESC/ERS clinical guidelines for pulmonary hypertension, and what it was like to be the first patient ever to be included in the guidelines Task Force”, by Pisana Ferrari
Clinical practice guidelines present relevant evidence to help health care professionals in making decisions about therapeutic options and include recommendations intended to optimise patient care. They are updated on a regular basis to take into account the latest evidence and practice. The European Society of Cardiology (ESC) and the European Respiratory Society (ERS) joint clinical…
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European Society of Cardiology (ESC) Annual Congress 26-29 August 2022
The ESC’s 2022 Annual Congress is taking place in Barcelona from August 26 to 29. This is an important event for the PH community as the NEW joint ESC/ERS Guidelines for the diagnosis and treatment of pulmonary hypertension are being presented officially to the scientific community for the first time! The latest version was published…
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European Respiratory Society (ERS) Annual Conference 2022, September 4-6, 2022
The European Respiratory Society (ERS)’s Annual Conference 2022 is taking place in Barcelona on September 4-6, 2022. The NEW ERS/ESC guidelines on the diagnosis and treatment of pulmonary hypertension will be presented during the congress on September 5, session 343 and a number of other sessions on PH are also planned. Browse the programme at…
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Dates for the European Rare Disease Organisation, EURORDIS, Summer School for Patient Advocates 2023 now announced: June 19-23, 2023, Barcelona
The EURORDIS Summer School on Medicines Research & Development consists of a one week of face-to-face training, held in June in Barcelona. Free e-learning modules are also available on demand. The EURORDIS Summer School aims to provide rare disease patient advocates with the knowledge and skills needed to become experts in medicines research and development.…
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How do clinical trials work? Here is a video by top pulmonary hypertension medical expert Vallerie McLaughlin that explains it all! A phaware global initiative
Vallerie McLaughlin, MD from Michigan Medicine’s Cardiovascular Center, discusses the basics of clinical trials in this very informative video care of phaware. Check out the video on the phaware YouTube channel at this link Learn more about phaware at this link
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“Building from patient experiences to deliver patient-focused healthcare systems in collaboration with patients”, Springer, July 19, 2022
As patients we are delighted to see that the importance and the added value of involving patients in health care decisions and policies is increasingly being recognised. In this very interesting article published on September 16, 2022, the authors note that the application of patient experience data to inform healthcare decisions is still an emerging…
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Standing up for pulmonary hypertension patients in Turkey, an interview with Kamil Hamidullah, President of PAHSSc
Background In 1991, Kamil Hamidullah’s brother was the first person to be diagnosed with pulmonary hypertension in Turkey and, four years later, he was given the same diagnosis himself. Trading in his dreams of being a pilot, Kamil now heads up the Pulmonary Arterial Hypertension and Scleroderma Patient Association (PAHSSc). We caught up with him…
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PAHSSc, Turkish pulmonary hypertension association, interview with Shaun Clayton, Director of Membership Support at the Pulmonary Hypertension Association (PHA UK)
Could you kindly tell us something about yourself? I am the Director of Membership Support at the Pulmonary Hypertension Association (PHA UK), where I have worked for the last ten years. As part of a small yet dynamic team, my role is to ensure the charity is supporting its membership in the best possible way.…
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EURORDIS, the European Rare Disease Organisation, and EFPIA, the European Federation of Pharmaceutical Industries and Associations issue Joint Statement on how to improve patient access to medicines
The EURORDIS-EFPIA Joint Statement on proposals to improve patient access to medicines was published on June 15 2022. As the EURORDIS-EFPIA press release reads “This is the first time that EURORDIS-Rare Diseases Europe, as a patient organisation, has come together with the pharmaceutical industry’s European organisation in such a structured dialogue. Discussions focused on how…
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June 9, 2022: Patient engagement in drug development, a live symposium organised by admedicum
On June 9th 2022, patient engagement experts at admedicum organized a live event in collaboration with HollandBIO and INSMED Pharmaceuticals, Inc. in Utrecht, with over 70 attendees and distinguished speakers from patient organisations, healthcare, regulatory and industry. The theme was “Patient engagement in 2030: how can patient engagement contribute towards building a new ecosystem for…
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PAHSSc, Turkish pulmonary hypertension association, interview with Noriko Murakami, President of PHA Japan, mother of a young patient who had a lung transplant from a living donor
Noriko Murakami is the President of PHA Japan and the mother of Yukiko, a young PH patient who had a lung transplant surgery from a live donor. The PAHSSc is grateful to Mrs. Noriko Murakami for having agreed to contribute to its magazine Nefes (The Breath ) with insights on lung transplantation from a live…
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New pulmonary hypertension patient booklet published by RespiFIL, the French national network for rare respiratory diseases
The pulmonary hypertension patient booklet published in June 2022 by RespiFIL gives an overview of the disease, its symptoms, its diagnosis and available treatments. There are also tips on how to live better with the disease on a daily basis. It was written in collaboration with health professionals from expert pulmonary hypertension centres and the…
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PAHSSc, Turkish pulmonary hypertension association, interview with Aryeh Copperman, the CEO of the PH Israel Patient Association and husband of a pulmonary arterial hypertension patient
Would you kindly give us some information about yourself? My name is Aryeh Copperman, I am the CEO since 2005 of Isreal’s pulmonary hypertension association. I have a BA in Accounting and information systems, and Masters Degree in Public Health, from the Hebrew University in Jerusalem. I am married with 4 children. My wife has…
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PHA Europe “Call to Action on the unmet needs of patients with pulmonary hypertension” launch event in the European Parliament, April 2022
PHA Europe organized an event in the EU Parliament on April 26, 2022 for the launch of its “Call to Action on the unmet needs of patients with pulmonary hypertension”. The event was hosted by MEP Istvan Ujhelyi (Hungary) and chaired by Prof. Marc Humbert (ERS President). The Call to Action is a revisit of…
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“Inspirer, s’exprimer”, a pulmonary arterial hypertension conversation kit to help patients communicate with doctors and with their loved ones, by HTaPFrance, the French pulmonary hypertension association
On the occasion of May 5, the Pulmonary Hypertension Awareness Day, in 2022, HTaPFrance released the French version of a “Pulmonary Hypertension conversation kit” developed by Janssen, as part of the PHuman project , in collaboration with pulmonary hypertension patient associations around the world. The aim is to help patients better understand the condition and…
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“Regards croisés”, a video with testimonials from pulmonary arterial hypertension patients on intra-venous 24/7 prostanoid treatment, by the French pulmonary hypertension association, HTaPFrance
On the occasion of the 2022 edition of the Pulmonary Hypertension Awareness Day, on May 5, HTaPFrance released a short film titled “Regards croisés”, which presents three people who currently have or have had epoprostenol treatment intravenously, using a pump and a centralised catheter. They share their experience with the pump in day to day…
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Pulmonary arterial hypertension French educational video by Respifil, the French health network for rare pulmonary diseases
Excellent educational video in French language about pulmonary arterial hypertension developed by Respifil. Discusses causes, symptoms, diagnostic work up, treatments. Features interviews with French pulmonary hypertension experts from the French Network of pulmonary hypertension (Pulmotension) including Prof. Marc Humbert and Olivier Sitbon from the University Hospitals of Paris-Sud Bicetre, Le Kremlin-Bicetre (France), and a pulmonary…
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European Respiratory Society (ERS) web event on “Living with rare respiratory diseases through the COVID-19 pandemic”
This live online discussion organised by the European Respiratory Society (ERS) was held on March 23, 2022, and focused on the experiences and learnings of specialists and patients in the fields of idiopathic pulmonary fibrosis, pulmonary hypertension, cystic fibrosis and bronchiectasis ,since the emergence of COVID-19. ERS President Elect Professor Marc Humbert and European Respiratory…
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“The Added Value of Patient Engagement in Early Dialogue at the European Medicines Agency (EMA): Scientific Advice as a Case Study”, Frontiers in Medicine
ABSTRACT The European Medicines Agency provides Scientific Advice to medicines developers and patient input has been an integral part of this process for many years. As end users of medicines, patients bring their perspectives to many different processes along EMA’s regulatory pathway, complementing the scientific expertise. While the value of including patients has been…
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The European Medicines Agency (EMA) updates its engagement framework with patients, consumers and their organisations
The European Medicines Agency (EMA) engagement framework aims to Facilitate participation of patients and consumers in regulatory activities all along the entire lifecycle of medicines; Foster the development of guidance and methodologies to increase collection and use of relevant patient experience data in the context of regulatory decision making; Ensure that patients, consumers and their…
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What are the European Reference Networks (ERNs) and why it is important that the pulmonary hypertension community participate in its work
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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Live web event on “Improving lung health through the future European Health Data Space”, MEP Lung Health Group
On February 8 2022 the MEP Lung Health Group organised a virtual event on “Improving lung health through the future European Health Data Space”, hosted by the Group members Co-Chair MEPs Manuel Pizarro (S&D – Portugal) and Sara Cerdas (S&D – Portugal). Panelists included EU policy makers, digital health experts, healthcare professionals, and patient representatives…
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Promising results for the “PULSAR” and “RACE” clinical trials on sotarcept in pulmonary arterial hypertension
On 20.5.2021 Respifil, the French health network for rare pulonary diseases, published an article by Prof. Marc Humbert and Dr. Xavier Jais reporting on the American Thoracic Society (ATS)’s 2022 Congress and the promising results of the “PULSAR” and “RACE” studies for sotatercept in pulmonary arterial hypertension. Read more on the Respifil website at this…
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European Patients’ Academy on Therapeutic Innovation (EUPATI), a patient-led initiative to enhance knowledge of medicine R & D processes
The European Patients’ Academy on Therapeutic Innovation (EUPATI) is a patient-led partnership working across stakeholders to enhance patient engagement, registered as an independent non-profit Foundation in the Netherlands. It announced today an important milestone for their “Toolbox”: 5 million unique users since its launch in 2016. Explore the EUPATI Toolbox to learn more about medicine…
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Patient input can be paramount in developing digital health products attending to their medical needs
The adoption of “patient design” is one of keys factors in the success of digital health companies according to Bertalan Meskó, MD, PhD, Director of The Medical Futurist Institute. In a recent article titled “Best Practices In Digital Health: 9 Keys To Build A Future-Ready Organisation”, he says that patients, who are the end-user of…
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2nd edition of “Nefes”, the Turkish PH patient association PAHSSc’s monthly newsletter
The 2nd edition of Nefes contains Interviews with health care professionals, an article about the PAHSSc President Kamil Hamidullah and a number of patient stories. Download the newsletter at this link: ac24e500cf111ce1a4741e3e0f69954a
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The EU Clinical Trials Regulation came into force 31st of January 2022
The European Union (EU) pharmaceutical legislation known as the Clinical Trials Regulation comes into force today, the 31st of January 2022. It aims to ensure the EU offers an attractive and favourable environment for carrying out clinical research on a large scale, with high standards of public transparency and safety for clinical trial participants. Prior to…
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