The Pulmonary Hypertension Association UK shares video interviews about sotatercept with experts at the Royal Papworth Hospital UK and the association’s Chairman

There is a lot of discussion and excitement at the present moment in the pulmonary hypertension community in the anticipation of the approval of sotatercept. The Pulmonary Hypertension Association UK has published some very insightful conversations with two leading specialists, Dr. Joe Newman, Clinical Research Fellow at the Royal Papworth Hospital, and Dr. Mark Toshner, Consultant […]

The Pulmonary Hypertension Association UK shares video interviews about sotatercept with experts at the Royal Papworth Hospital UK and the association’s Chairman Read Post »

The European Medicines Agency (EMA) has issued a call for patient representatives to join the Committee for Orphan Medicinal Products (COMP)

The European Commission has launched a call for expressions of interest to represent patients’ organisations in European Medicines Agency’s (EMA) Committee for Orphan Medicinal Products (COMP). This is a very important opportunity for patients to have a role in the approval of orphan medicinal products! The call aims to fill three positions nominated by the

The European Medicines Agency (EMA) has issued a call for patient representatives to join the Committee for Orphan Medicinal Products (COMP) Read Post »

Le Monde publishes an interview Prof. Marc Humbert, Director of the French National Reference Center for Pulmonary Hypertension, and the French patient association HTaPFrance team

On the occasion of Pulmonary Hypertension Awareness Month in November, the French Pulmonary Hypertension Association HTaPFrance had the great pleasure of being interviewed by the Le Monde, France’s leading daily newspaper. This collaboration with Prof. Marc Humbert, Director of the French National Reference Center for Pulmonary Hypertension, facilitated by the MSD laboratory, helped to shed

Le Monde publishes an interview Prof. Marc Humbert, Director of the French National Reference Center for Pulmonary Hypertension, and the French patient association HTaPFrance team Read Post »

Exclusive interview with Prof. Serpil Erzurum, MD, Cleveland Clinic’s Chief Research and Academic Officer, for the Turkish pulmonary Hypertension Association (PAHSSc)

Prof. Serpil Erzurum is Cleveland Clinic’s Chief Research and Academic Officer and Chair of the Lerner Research Institute. Dr. Erzurum has won numerous awards, has published more than 300 articles, and is among the top 1% cited researchers in the world. This interview was originally published in English on Nefes, the magazine of the Turkish

Exclusive interview with Prof. Serpil Erzurum, MD, Cleveland Clinic’s Chief Research and Academic Officer, for the Turkish pulmonary Hypertension Association (PAHSSc) Read Post »

Esclusive interview with Emeritus Professor Lewis J. Rubin, for the Turkish Pulmonary Hypertension Association PAHSSc

Prof. Lewis J. Rubin with Kamil Hamidullah, immediate past President of the PAHSSc This interview was originally published in Turkish on Nefes, the magazine of the Turkish Pulmonary Hypertension Association PAHSSc in December 2021.Our sincerest thanks go to our friends and colleagues at the PAHSSc for graciously allowing us to republish this interview and share with

Esclusive interview with Emeritus Professor Lewis J. Rubin, for the Turkish Pulmonary Hypertension Association PAHSSc Read Post »

Exclusive interview with Prof. Maurice Beghetti on pulmonary arterial hypertension and Eisenmenger Syndrome in children and adolescents for the Turkish Pulmonary Hypertension Association, PAHSSc

This interview was originally published in Turkish on Nefes, the magazine of the Turkish Pulmonary Hypertension Association PAHSSc, in June 2022. We extend our sincerest thanks to our friends and colleagues at the PAHSSc for graciously permitting us to republish and share it with the wider pulmonary hypertension community. Professor Maurice Beghetti is Head of

Exclusive interview with Prof. Maurice Beghetti on pulmonary arterial hypertension and Eisenmenger Syndrome in children and adolescents for the Turkish Pulmonary Hypertension Association, PAHSSc Read Post »

Exclusive interview with Prof. Sean Gaine, Director of the Irish National Pulmonary Hypertension Unit, for the Turkish Pulmonary Hypertension Association PAHSSc

Photo: Prof. Sean Gaine with Kamil Hamidullah, immediate Past President of PAHSSc, the Turkish Pulmonary Hypertension Association. This interview was originally published in Turkish on Nefes, the magazine of the Turkish Pulmonary Hypertension Association PAHSSc, on the March 2023 edition. Our sincerest thanks go to the PAHSSc for very generously sharing this interview with the

Exclusive interview with Prof. Sean Gaine, Director of the Irish National Pulmonary Hypertension Unit, for the Turkish Pulmonary Hypertension Association PAHSSc Read Post »

In a TEDx talk Migdalia Denis, Leader of the Pulmonary Hypertension Latin Society, explores the transformative power of adversity and how it can lead us to discover our true purpose

Migdalia Denis, leader of the Latin America Pulmonary Hypertension Association (Sociedad Latina de Hipertensión Pulmonar), was invited on May 18, 2018, to deliver a TEDx talk. Migdalia has recently sent us the link to her talk and asked us to share it on the PH-KSP, in the hope that her message may inspire others to

In a TEDx talk Migdalia Denis, Leader of the Pulmonary Hypertension Latin Society, explores the transformative power of adversity and how it can lead us to discover our true purpose Read Post »

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

Proposed revision of EU pharmaceutical laws, released on April 26, 2023, will contribute to making the EU regulatory framework more patient-centred Read Post »

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

An Interview With Pulmonary Hypertension Association (PHA) President and CEO Matt Granato for the RareDiseaseAdvisor, April 19, 2023 Read Post »

Interview with Eva Otter, a pulmonary hypertension patient and 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

Interview with Eva Otter, a pulmonary hypertension patient and President of PHA Europe, the European Pulmonary Hypertension Association, April 7, 2023 Read Post »

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

Interview with the President of AIPI, Italian pulmonary hypertension association for “Italian Medical News”, March 1, 2023, on the role of patient associations Read Post »

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

First therapy to treat transplant patients with post-transplant lymphoproliferative disease approved for marketing authorisation by the European Medicines Agency (EMA), October 14, 2022 Read Post »

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.

PAHSSc, Turkish pulmonary hypertension association, interview with Shaun Clayton, Director of Membership Support at the Pulmonary Hypertension Association (PHA UK) Read Post »

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

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 Read Post »

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

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  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 »

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

The EU Clinical Trials Regulation came into force 31st of January 2022 Read Post »

Interview with Hans Dieter Kulla, the President of The German PH association PHeV for “Nefes” (1st issue of the Turkish pulmonary hypertension association PAHSSc magazine) 

Could you kindly tell us something about yourself? I have been president of the German PHeV since 2012. My input and the one of all others is voluntary! I am not a patient and I contribute to our organization in a “strategical” way. We have regional groups in nearly every region of Germany. Our group

Interview with Hans Dieter Kulla, the President of The German PH association PHeV for “Nefes” (1st issue of the Turkish pulmonary hypertension association PAHSSc magazine)  Read Post »

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