Pulmonary Hypertension Knowledge Sharing Platform

Well done HTaPFrance, Maggy Surace, all your team and members!

December 2024 brought valuable insights for our community: here's a curated selection of key updates in research, treatment, patient support, and advocacy from the "News" Section of the Pulmonary Hypertension Knowledge Sharing Platform Living with PH 🔹 Appraisal and evaluation of quality of life in pulmonary arterial hypertension instruments: A systematic review, Respiratory Medicine 🔹 AI Model for Depression Diagnosis Developed in Finland: A Potential Breakthrough for Accessible and Early Mental Health Care 🔹 Poor sleep quality should not be overlooked in pulmonary arterial hypertension patient as it represents an additional disease burden 🔹 Organizing health information is crucial to rare disease management, Jen Cueva, Pulmonary Hypertension News, December 4, 2024 🔹 Update on the Pulmonary Vascular Research Institute (PVRI)’s Pulmonary Hypertension Global Survey (PH GPS) Treatments 🔹 Efficacy and Safety of Sotatercept Across Ranges of Cardiac Index in Patients with Pulmonary Arterial Hypertension, Journal of Heart and Lung Transplantation 🔹 Challenges associated with non-oral pulmonary arterial hypertension treatments, Therapeutic Advances in Respiratory Disease 🔹 Challenges in implementing the new European treatment algorithm in Central and Eastern Europe: a review from the Polish Heart Journal Patient-doctor communication 🔹 Effective Communication Key to Improving Medication Adherence in Pulmonary Arterial Hypertension, findings of the PERSIST Study, Pulmonary Circulation Medical devices 🔹 Findings of European Patient Forum (EPF) survey on the implementation of EU legislation on medical devices now published Patient association activities 🔹 National Dutch Pulmonary Hypertension Information Day: A Blend of Education, Connection, and Hope 🔹 The first evaluation report of the European Reference Networks since their launch in 2017 has now been published by the EU Commission 🔹 Knowledge, Support, and Hope: a report of the 2024 Patient Conference organised by the German Pulmonary Hypertension Association ph e.v. 🔹 International Symposium on Pulmonary Hypertension and 9th Meeting of the Latin American Leaders, Miraflores, Peru 🔹 The UK Pulmonary Association’s “Listening Line” support service provides dedicated time to talk through worries or concerns about emotional or mental wellbeing. 🔹 The Alliance for Pulmonary Hypertension's 14 live webinar series now completed. Organ transplant 🔹 Special issue of “Transplant International” addresses race, gender, socioeconomic and geographic disparities in transplantation Read more on the Pulmonary Hypertension Knowledge Sharing Platform at this link https://ph-ksp.com/blog/

Are the European pulmonary arterial hypertension (PAH) treatment algorithms applicable everywhere in Europe? What are the challenges in implementing them? This paper discusses the proposed updates to the ESC - ERS treatment algorithms from the World Symposium on Pulmonary Hypertension 2024, and examines the challenges of implementing these advances in Central and Eastern European countries, where PAH-specific treatments were introduced nearly two decades later than in Western Europe. While these countries now have access to most oral therapies and some advanced treatments, they still face barriers in accessing newer therapies like sotatercept, highlighting the ongoing disparities in PAH care across Europe despite similar disease prevalence. Grzegorz Kopec, prof. Andris Skride MD, PhD, Egle Ereminiene, Iveta Simkova, Roxana Enache, Miroslav Samarzija, Assoc. Prof. Barbara Salobir, Pavel Jansa #pulmonaryhypertension #pulmonaryarterialhypertension #PAH #chronicthromboembolicpulmonaryhypertension #CTEPH #knowledgesharing #knowledgeexchange #patientempowerment #patienteducation #allianceforph #organtransplant #organdonation #transplant #lungtransplant HTaPFrance Stichting Pulmonale Hypertensie / PH Association the Netherlands PH Belgium - Pulmonale Hypertensie vzw AIPI Italian Pulmonary Hypertension Association Pulmoner Hipertansiyon ve Skleroderma Hasta Dernegi Hellenic Community for Pulmonary Hypertension Pulmonale Hypertonie E.V. Ieva Plume PHA Polska PHA Japan Alliance for Pulmonary Hypertension Pulmonary Hypertension Knowledge Sharing Platform

A surgical team at Royal Papworth Hospital has carried out the UK’s first lung transplant using a new machine which ‘reconditions’ donor organs. The team, led by Mr Marius Berman, Mr Giuseppe Aresu and Mr pradeep kaul used a technique called ex-vivo lung perfusion (EVLP). This takes donated lungs which are initially considered marginally acceptable or marginally unacceptable for transplant, reconditions them outside the body in a special machine - the XPS system from XVIVO - and can make them suitable for donation. Daniel Evans-Smith (49) became the first person in the UK outside of clinical trials to receive a double-lung transplant using this new machine, which could improve the number of lungs available for donation and benefit more patients currently waiting for a lifesaving lung transplant. Dr Jas Parmar, Transplant Consultant at Royal Papworth and also Chair of Cardiothoracic Advisory Group (Lungs) said: "We are delighted to be able to offer this opportunity to these very ill patients in need of lung transplantation. "We have only been able to do this with the support that we have enjoyed from our trust, NHS England, NHS Blood and Transplant and of course all donor families without whom this work would be impossible. We are always indebted to their selfless act of organ donation.” After rehab in critical care and then on our surgical ward, Daniel recently returned home to Northampton. He said: "I can’t thank my donor and their family enough. Even in this short period of time after transplantation, my life has improved from where I was this time last year.” #Surgery #EVLP #LungTransplant #Transplant #RoyalPapworth #NHS

The Alliance for Pulmonary Hypertension's 2023-4 pulmonary hypertension webinar series is now complete! We are deeply grateful to everyone who contributed to its success - from the volunteers who gave their time, to the speakers who shared their expertise, to the donors who believed in our cause. Your support has made this year truly special. 🔹 14 live webinars since the launch of the series in June 2023. 🔹 Broad range of topics related to PH care and patient wellbeing. 🔹 Leading world HCPs and advocates as speakers. 🔹 24 scientific experts 🔹 Clinicians, researchers, surgeons, geneticists, psychologists 🔹 13 patients/patient advocates. 🔹 2 patient engagement specialists who served as moderators. 🔹 Representing 20 countries across 5 continents. 🔹 Slides, video recordings and full transcripts available online. 🔹 Transcripts translatable in 40 languages via embedded plug in. 🔹 5.000+ views of the video recordings. Topics covered: 🔹 Patients as partners and shared decision making, a new paradigm in PH care 🔹 The rise of the PH association movement & its role in current care landscape 🔹 Patient-reported outcome measures (PROMs).  🔹 Pregnancy and family planning.  🔹 The new treatment algorithm in the 2022 PH guidelines.  🔹 Lung and heart/lung transplantation in PH.  🔹 Multimodal treatment strategies for CTEPH.  🔹 Pulmonary endarterectomy and balloon pulmonary angioplasty in CTEPH.  🔹 Congenital heart disease (CHD) in PH.  🔹 Genetics and genetic counseling in PH.  🔹 Clinical trials in PH.   🔹 Mental health and PH.  🔹 Access to PH care in Global South part 1 (Central and Latin America).  🔹 Access to PH care in Global South part 2 (Africa and Asia). This webinar series highlighted both the significant advances made in PH care and the considerable work still needed to ensure comprehensive, equitable, and accessible treatment for all PH patients globally. Speakers/moderators Alena Adarbehova Maurice Beghetti Dr Prashant Bobhate Louise Bouman - van der Waal Marion Delcroix Sophia Esteves Pisana Ferrari Melanie Gallant-Dewavrin Simon Gibbs Alicia García Gómez Matt J. Granato Marius Hoeper Kondrad Hoetzenecker Marc Humbert XAVIER JAIS David Jenkins Hans-Dieter Kulla Vallerie McLaughlin Hiromi Matsubara Gergely Meszaros JD, MSc David Montani Guillermo Montes Esther Nossent, MD Karen Olsson Ayotunde Omitogun Florence Perrin-Szabo Robert Pleticha Matina Prapa Rishabh Radhakrishnan Gregg Rawlings Dr. Andreas L.G. Reimann Sandeep Sahay, MD, MSc Laurent Savale Olivier SITBON Simon Stewart Katleen Verbergt James Weatherald Julie Wacker Monica Zagolin More news about our 2025 program coming soon. Stay tuned! #pulmonaryhypertension #pulmonaryarterialhypertension #PAH #chronicthromboembolicpulmonaryhypertension #CTEPH #knowledgesharing #knowledgeexchange #patientempowerment #patienteducation #allianceforph #organtransplant #organdonation #transplant #lungtransplant

The article is a personal reflection on living with pulmonary hypertension (PH) since childhood and the enduring role of the author’s parents, particularly their mother, in managing their healthcare. It explores the complexities of the parent-child dynamic in chronic illness care, detailing how the author's dependence on parental support has continued into adulthood due to their healthcare needs. The piece highlights the uniqueness of each family’s approach to caregiving, emphasizing gratitude for a supportive and loving relationship while acknowledging the challenges and individuality of such arrangements. https://lnkd.in/d6Y8DVQK #pulmonaryhypertension #pulmonaryarterialhypertension #PAH #chronicthromboembolicpulmonaryhypertension #CTEPH #knowledgesharing #knowledgeexchange #patientempowerment #patienteducation #allianceforph #organtransplant #organdonation #transplant #lungtransplant

Seralutinib is an investigational medication for the treatment of adults with PAH. Click the link to see if you’re eligible to be a part of evaluating this inhaled investigational therapy: https://goss.bio/484RzLl #GossamerBioPartner #sponsored #Phase3ClinicalTrial

A study has found that lung tissue and blood vessel cells from people with pulmonary arterial hypertension (PAH) produce fewer vitamin D receptors (VDRs) than normal, contributing to excessive cell growth that narrows pulmonary arteries. Treating these cells with calcitriol, the active form of vitamin D, reduced VDR deficiency and curbed excessive cell growth, suggesting vitamin D deficiency plays a role in PAH development and progression. Read more on Pulmonary Hypertension News at this link: https://lnkd.in/dat6TT7u #pulmonaryhypertension #pulmonaryarterialhypertension #PAH #chronicthromboembolicpulmonaryhypertension #CTEPH #knowledgesharing #knowledgeexchange #patientempowerment #patienteducation #allianceforph #organtransplant #organdonation #transplant #lungtransplant HTaPFrance Stichting Pulmonale Hypertensie / PH Association the Netherlands PH Belgium - Pulmonale Hypertensie vzw AIPI Italian Pulmonary Hypertension Association Pulmoner Hipertansiyon ve Skleroderma Hasta Dernegi Hellenic Community for Pulmonary Hypertension Pulmonale Hypertonie E.V. Ieva Plume PHA Polska PHA Japan Alliance for Pulmonary Hypertension Pulmonary Hypertension Knowledge Sharing Platform