Launch of a new EURORDIS platform with resources to help plan and implement patient partnerships in healthcare networks

The newly launched EURORDIS Patient Partnership Hub brings together resources that facilitate patient-clinician collaboration within the European Reference Networks (ERNs) in one convenient location. From templates and best practice webinars to guides and factsheets, everything is available in a single place. Explore the Patient Partnership Hub at this link and watch the demo webinar here

Launch of a new EURORDIS platform with resources to help plan and implement patient partnerships in healthcare networks Read Post »

Effective Communication Key to Improving Medication Adherence in Pulmonary Arterial Hypertension, findings of the PERSIST Study, Pulmonary Circulation

A recent study published in Pulmonary Circulation highlights the vital role of proactive communication in improving medication persistence among individuals with pulmonary arterial hypertension. The study, titled PERSIST (Practices affEcting macitentan and selexipag patient persistence Rates utilizing pulmonary arterial hypertension clinical Site and patIent perSpecTives), surveyed 134 patients and 23 healthcare professionals across the United

Effective Communication Key to Improving Medication Adherence in Pulmonary Arterial Hypertension, findings of the PERSIST Study, Pulmonary Circulation Read Post »

The Health Policy Partnership teams up with a multidisciplinary group of international experts to develop a policy toolkit for pulmonary arterial hypertension

The The Health Policy Partnership, a UK-based specialist health policy consultancy. convened a multidisciplinary group of international experts – consisting of pulmonary arterial hypertension patient advocates, cardiologists and pulmonologists – to support the development of a range of advocacy resources. The expert steering committee includes Dr Pilar Escribano Prof. Marc Humbert, Prof Nicholas Kolaitis, Prof

The Health Policy Partnership teams up with a multidisciplinary group of international experts to develop a policy toolkit for pulmonary arterial hypertension Read Post »

The Rise of the “Expert” Patient: Opportunities and Challenges in Democratizing Drug Development

For many years, drug development has lagged behind healthcare in engaging patients. Recently, however, the field has shifted toward more active patient involvement, recognizing the value of patient insights both for democratizing drug creation and enhancing innovation. A recent article published in “Science is Culture” analyzes the potential and challenges of involving patients in drug

The Rise of the “Expert” Patient: Opportunities and Challenges in Democratizing Drug Development Read Post »

The European Lung Foundation (ELF)’s 2023 Annual Report highlights its ongoing efforts to to collaborate with patients, patient organisations, healthcare professionals and the public

The Alliance for Pulmonary Hypertension is a proud member of the European Lung Foundation (ELF) Patient Organisation Network and is represented in the European Lung Foundation Pulmonary Hypertension Patient Advisory Group (PH PAG). The European Lung Foundation Patient Advisory Groups and working groups are made up of people who have an interest in a particular

The European Lung Foundation (ELF)’s 2023 Annual Report highlights its ongoing efforts to to collaborate with patients, patient organisations, healthcare professionals and the public Read Post »

Video recording of the European Respiratory Society (ERS) Vision Live panel discussion titled “Review of the World Symposium on PH”, September 2, 2024 now available

The video recording of the European Respiratory Society (ERS) Vision Live panel discussion titled “Review of the World Symposium on Pulmonary Hypertension”, which took place on 2 September, 2024, in now available online on the ERS Respiratory Channel at this link Expert panellists Marc Humbert, Anton Vonk Noordegraaf, Ulrich Silvia, Isabel BLANCO VICH and Louise Bouman

Video recording of the European Respiratory Society (ERS) Vision Live panel discussion titled “Review of the World Symposium on PH”, September 2, 2024 now available Read Post »

Impressive numbers for the latest edition of World Pulmonary Hypertension Day: full report in the summer 2024 edition of Mariposa, PHA Europe’s journal

World Pulmonary Hypertension Day (May 5) is increasingly becoming a pivotal global event for raising awareness about the condition and advocate for improved care, as highlighted by the impressive figures shared in the latest edition of PHA Europe’s magazine, Mariposa. Launched by the Asociación Nacional de Hipertensión Pulmonar ANHP in 2012, World PH Day is

Impressive numbers for the latest edition of World Pulmonary Hypertension Day: full report in the summer 2024 edition of Mariposa, PHA Europe’s journal Read Post »

Key insights from the “Patient Perspective” article in the World Symposium on Pulmonary Hypertension (WSPH) proceedings, European Respiratory Journal, August 29, 2024

The full proceedings of the World Symposium on Pulmonary Hypertension which was held in Barcelona 29.6-1.7, 2024, have now been published in the European Respiratory Journal at this link. The proceedings cover the work of the 15 task forces; Task Force n°1’s article is titled “Exploring the patient perspective in pulmonary hypertension” (see below for

Key insights from the “Patient Perspective” article in the World Symposium on Pulmonary Hypertension (WSPH) proceedings, European Respiratory Journal, August 29, 2024 Read Post »

For far too long, medicine has ignored the valuable insights that patients have into their own diseases. It is time to listen, “Aeon Psyche”, August 5, 2024

An article titled “Empowering patient research” which was recently published on the Aeon Psyche newsletter on August 5, 2024, discusses the challenges faced by patients with chronic illnesses and disabilities in the healthcare system, particularly in research and academia. The article advocates for the inclusion of patients as active participants in medical research, arguing that

For far too long, medicine has ignored the valuable insights that patients have into their own diseases. It is time to listen, “Aeon Psyche”, August 5, 2024 Read Post »

Patients as teachers? A pilot experiment of patient-led online learning modules for HCPs in Canada proves the effectiveness of this approach, “BMC Medical Education”, May 10, 2024

A study titled “Patients as teachers: a within-subjects randomized pilot experiment of patient-led online learning modules for health professionals” was published on BMC Education on May 10, 2024. Medical education programs are increasingly including presentations by individuals with lived experiences. The authors of the article say that relying on a limited number of speakers may

Patients as teachers? A pilot experiment of patient-led online learning modules for HCPs in Canada proves the effectiveness of this approach, “BMC Medical Education”, May 10, 2024 Read Post »

Being knowledgeable about health (“health literate”) does not automatically translate to the ability to manage a disease, “Psychology Today”, May 14, 2024 

“Health literacy” is defined as the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions. Lack of health literacy has been linked to poor health outcomes, higher mortality rates, and increased healthcare costs. Kristen Carter, M.S. is the author of a recent article in Psychology

Being knowledgeable about health (“health literate”) does not automatically translate to the ability to manage a disease, “Psychology Today”, May 14, 2024  Read Post »

Driving innovation and patient-centred care in pulmonary hypertension: the inspiring journey of Dr. Joanna Pepke-Zaba, March 28, 2024

Dr. Joanna Pepke-Zaba, renowned consultant respiratory physician at Royal Papworth Hospital, recently received a prestigious European Respiratory Society (ERS) lifetime achievement award, marking another milestone in her illustrious career. In an interview with Saša Janković, recently published on March 18, 2024 on “Hospital Health Care Europe”, Dr. Pepke-Zaba discusses her dedication to advancing research and

Driving innovation and patient-centred care in pulmonary hypertension: the inspiring journey of Dr. Joanna Pepke-Zaba, March 28, 2024 Read Post »

“Patient Involvement in Guidelines”, a webinar organised by ERKNet and EURORDIS, featuring Matt Bolz-Johnson as speaker, April 22, 2024

Clinical practice guidelines provide essential recommendations for diagnosing and treating medical conditions. In the realm of pulmonary hypertension a groundbreaking milestone has been achieved with the inclusion of two patient representatives, Pisana Ferrari and Gergely Meszaros JD, MSc, as members of the dedicated task force and co-authors of the new guidelines jointly developed by the European Society of Cardiology and the European Respiratory

“Patient Involvement in Guidelines”, a webinar organised by ERKNet and EURORDIS, featuring Matt Bolz-Johnson as speaker, April 22, 2024 Read Post »

“Guide to developing a Patient Journey”, a structured approach to understand the natural progression of rare diseases and identify unmet needs, EURORDIS, European Rare Disease Organisation, March 2024

The “Guide to developing a Patient Journey”, published in Mars 2024 by EURORDIS, the European Rare Disease Organisation, provides step-by-step instructions, practical tips, and tools to aid patient representatives in developing Patient Journeys for their respective rare conditions. What are Patient Journeys? Patient Journeys represent an innovative approach aimed at understanding the natural progression of

“Guide to developing a Patient Journey”, a structured approach to understand the natural progression of rare diseases and identify unmet needs, EURORDIS, European Rare Disease Organisation, March 2024 Read Post »

Embark on a journey to discover the history of the pulmonary hypertension association movement by revisiting the AfPH’s recent webinar

This Alliance for Pulmonary Hypertension webinar marks the sixth installment in a series dedicated to delving into the groundbreaking innovations outlined in the 2022 ESC/ERS clinical guidelines for diagnosing and treating pulmonary hypertension. One particularly notable advancement is the inclusion in the guidelines, for the first time, of a new section focusing on ‘Patient Associations and

Embark on a journey to discover the history of the pulmonary hypertension association movement by revisiting the AfPH’s recent webinar Read Post »

“Take 2 – the new Me after a transplant”, a educational campaign promoted by the European Society for Organ Transplant (ESOT)

In the past few months, the European Society for Organ Transplant (ESOT) channels have been running a campaign called “Take 2 – the new Me after a transplant”. The campaign seeks to empower patients by offering them valuable and reliable information and resources that can enhance their pre and post-transplant journey and raise public attention

“Take 2 – the new Me after a transplant”, a educational campaign promoted by the European Society for Organ Transplant (ESOT) Read Post »

Why quality indicators for pulmonary hypertension care are important from a patient perspective, Pisana Ferrari

It was a great honour to be invited to speak at the ERN-LUNG webinar on quality indicators for adult pulmonary arterial hypertension care, which took place on December 8, 2023, where I was asked to explain why these are important from a patient perspective. The webinar referenced an article in the European Journal of Heart

Why quality indicators for pulmonary hypertension care are important from a patient perspective, Pisana Ferrari Read Post »

Recording of the December 8, 2023 ERN-LUNG webinar on quality Indicators for pulmonary arterial hypertension is available

On December the 8th 2023 the European Reference Network for Rare Lung Diseases (ERN-Lung) hosted a webinar titled “Quality Indicators in Healthcare, the example of Pulmonary Hypertension”. The webinar refers to the scientific paper on quality indicators published in the European Journal of Heart Failure, in connection with the publication of the 2022 European Society

Recording of the December 8, 2023 ERN-LUNG webinar on quality Indicators for pulmonary arterial hypertension is available Read Post »

Wrapping up a successful year of pulmonary hypertension knowledge-sharing educational live web events!

The Alliance for Pulmonary Hypertension has just held the last webinar of the six-part series it launched in June 2023 exploring the innovations outlined in the 2022 joint clinical guidelines on pulmonary hypertension by the European Society of Cardiology (ESC) and the European Respiratory Society (ERS). Across these six insightful sessions, we delved into pivotal

Wrapping up a successful year of pulmonary hypertension knowledge-sharing educational live web events! Read Post »

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