An awareness campaign by the European Society for Organ Transplantation (ESOT) provides valuable resources to empower patients and enhance their pre and post-transplant journey, August 21, 2023

The 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 do […]

An awareness campaign by the European Society for Organ Transplantation (ESOT) provides valuable resources to empower patients and enhance their pre and post-transplant journey, August 21, 2023 Read Post »

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

Lancet publishes ground-breaking three-paper series on pulmonary hypertension, the first of which is co-authored by a patient and patient advocate! Read Post »

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

Pulmonary hypertension advocate Gergely Meszaros speaks at the Association of Cardiovascular Nursing & Allied Professions (ACNAP)’s annual conference in Edinburgh Read Post »

Slides and recording of our webinar on “Patients as Partners and Shared Decision Making” -June 6, 2023

Download the webinar slides 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. Transcript ARADIGM FOR PULMONARY HYPERTENSION CARE”, June 6, 2023 NB. This transcript can be translated into your preferred language – use orange button at

Slides and recording of our webinar on “Patients as Partners and Shared Decision Making” -June 6, 2023 Read Post »

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

Connecting and empowering the pulmonary hypertension community through newsletter exchange Read Post »

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

Results of study investigating effects of nutrition and lifestyle interventions in pulmonary arterial hypertension patients published in “Pulmonary circulation” Read Post »

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

“PARTNERING WITH PATIENTS AND SHARED DECISION MAKING: A NEW PARADIGM FOR PULMONARY HYPERTENSION CARE”, June 6, 2023 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 DISCLAIMER: Despite every effort to ensure the accuracy of this transcript, we strongly encourage

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 Read Post »

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

The AfPH’s first webinar on Partnering with Patients and Shared Decision-Making in Pulmonary hypertension care is on June 6, 16.30 CEST Read Post »

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)

The Alliance for Pulmonary Hypertension (AfPH) has become a member of the European Lung Foundation (ELF) Patient Organisation Network Read Post »

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

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 Read Post »

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

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

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

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

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

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

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

Youth involvement in patient organisations, an online survey by the European Patients Forum (EPF) Read Post »

“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

“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 Read Post »

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.

Dates for the European Rare Disease Organisation, EURORDIS, Summer School for Patient Advocates 2023 now announced: June 19-23, 2023, Barcelona Read Post »

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

June 9, 2022: Patient engagement in drug development, a live symposium organised by admedicum Read Post »

“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

“The Added Value of Patient Engagement in Early Dialogue at the European Medicines Agency (EMA): Scientific Advice as a Case Study”, Frontiers in Medicine Read Post »

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

The European Medicines Agency (EMA) updates its engagement framework with patients, consumers and their organisations Read Post »

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

European Patients’ Academy on Therapeutic Innovation (EUPATI), a patient-led initiative to enhance knowledge of medicine R & D processes Read Post »

“How-to guides” for patient engagement in key phases of medicines development, by the PFMD

Patient Focused Medicines Development (PFMD) is a not-for-profit collaborative initiative benefiting patients and health stakeholders by designing a patient-centred healthcare system with patients and all stakeholders. The importance of patient engagement (PE) across the medicines development continuum is widely acknowledged across diverse health stakeholder groups, including health authorities; however, the practical applications of how to

“How-to guides” for patient engagement in key phases of medicines development, by the PFMD Read Post »

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