“Exercise your way to better post-transplant health”, by the Council of Europe European Directorate for the Quality of Medicines & HealthCare EDQM

The Council of Europe and its Committee on Organ Transplantation support and recommend physical activity as a major way to improve the health status of transplant patients. Regular light-to-moderate exercise plays a crucial role in restoring both the physical and mental health of transplant recipients. The authors advise organ recipients ask their transplant doctors to […]

“Exercise your way to better post-transplant health”, by the Council of Europe European Directorate for the Quality of Medicines & HealthCare EDQM Read Post »

“Sotatercept for the Treatment of Pulmonary Arterial Hypertension”, New England Journal of Medicine

Marc Humbert, M.D., Ph.D.,  Vallerie McLaughlin, M.D.,  J. Simon R. Gibbs, M.D.,  Mardi Gomberg-Maitland, M.D.,  Marius M. Hoeper, M.D.,  Ioana R. Preston, M.D.,  Rogerio Souza, M.D., Ph.D.,  Aaron Waxman, M.D., Ph.D.,  Pilar Escribano Subias, M.D., Ph.D.,  Jeremy Feldman, M.D.,  Gisela Meyer, M.D.,  David Montani, M.D., Ph.D.,  et al.,  “Sotatercept for the Treatment of Pulmonary Arterial

“Sotatercept for the Treatment of Pulmonary Arterial Hypertension”, New England Journal of Medicine Read Post »

PHA Europe

PHA Europe European pulmonary hypertension umbrella organisation 33 member associations Address: Wilhelmstraße 21. A-1120 Vienna, Austria Phone Number: (+43) 1 402 3725 Association President: Eva Otter Association Email: info@phaeurope.org https://www.phaeurope.org/

PHA Europe Read Post »

“PH Human”, a JanssenWithMe platform provides support resources for people with pulmonary arterial hypertension and features a number of real-life experiences from patients

PH Human, part of the JanssenWithMe digital platform, was created in partnership with the pulmonary hypertension patient community and is dedicated to supporting people with the condition. It has a particular focus on pulmonary arterial hypertension (Group 1 WHO classification of pulmonary hypertension). It helps share real-life experiences from people living with pulmonary arterial hypertension

“PH Human”, a JanssenWithMe platform provides support resources for people with pulmonary arterial hypertension and features a number of real-life experiences from patients 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 »

Rosie’s “Breathtaking Story”, submitted by the Belgian French association HTAP Belgique

Rosie Matthysen was a pulmonary hypertension patient and a patient advocate. She was the founder of HTAP Belgique, the Belgian francophone pulmonary hypertension association, one of the founding members of PHA Europe. In this touching video poste on the PHA EUROPE YouTube channel Rosie tells her story and tells us about her life with pulmonary

Rosie’s “Breathtaking Story”, submitted by the Belgian French association HTAP Belgique Read Post »

“Accelerating Clinical Trials in the EU for better clinical trials that address patients’ needs”, a joint initiative of the EU Commission, the European Medicines Agency Heads of Medicines Agencies (HMA)

On January 2022 a new initiative launched by the European Commission, the Heads of Medicines Agencies (HMA) and the European Medicines Agency (EMA) aims to transform how clinical trials are initiated, designed, and run. This initiative, called “Accelerating Clinical Trials in the EU for better clinical trials that address patients’ needs“, aims to further develop

“Accelerating Clinical Trials in the EU for better clinical trials that address patients’ needs”, a joint initiative of the EU Commission, the European Medicines Agency Heads of Medicines Agencies (HMA) 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 »

First-ever UN Resolution addresses the challenges of the 300 Million Persons Living with a Rare Disease

On December 16, 2021 the UN General Assembly formally adopted Resolution A/RES/76/132 recognising the over 300 million Persons Living with a Rare Disease (PLWRD) worldwide and their families. The Resolution focuses on the importance of non-discrimination and advances key pillars of the UN Sustainable Development Goals (SDGs), including access to education and decent work, reducing

First-ever UN Resolution addresses the challenges of the 300 Million Persons Living with a Rare Disease Read Post »

In his inaugural speech Prof. Marc Humbert, newly elected President of the European Respiratory Society (ERS), makes the case for patient-centric medicine

Congratulations to Prof. Marc Humbert for his election as President of the European Respiratory Society (ERS). Prof. Humbert has published more than 700 peer-reviewed articles, mostly in the field of pulmonary hypertension, and is widely considered one of the world TLs in pulmonary hypertension. In his inaugural speech Prof. Humbert said he would continue to

In his inaugural speech Prof. Marc Humbert, newly elected President of the European Respiratory Society (ERS), makes the case for patient-centric medicine 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 »

An international patient survey on the care for pulmonary hypertension patients during the early phase of the COVID-19 pandemic, Orphanet Journal of Rare Diseases, May 2021

During the COVID-19 pandemic, many health care systems suspended their non-urgent activities. Pulmonary Hypertension patients were subjected to the same rules as other patients during the COVID-19 pandemic, with no prioritised care despite their rare and severe condition. A consortium composed of pulmonary hypertension patient associations and scientific societies was created to launch the PH-CARE-COVID survey,

An international patient survey on the care for pulmonary hypertension patients during the early phase of the COVID-19 pandemic, Orphanet Journal of Rare Diseases, May 2021 Read Post »

Launch of the European Society for Organ Transplantation (ESOT) hackathon to improve the well-being and quality of life (QOL) for transplant patients

The European Society for Organ Transplant (ESOT) is delighted to launch the first edition of the ESOT Hackathon to identify and develop tools to serve the transplant patient community. Whether it is an idea, a scenario, a prototype, an app, an interface, a proof of concept or a turnkey solution, ESOT is looking for innovative

Launch of the European Society for Organ Transplantation (ESOT) hackathon to improve the well-being and quality of life (QOL) for transplant patients Read Post »

Joint statement on the need for improved protection and prevention for immunocompromised patients in the context the COVID-19 pandemic, European Society for Organ Transplant (ESOT)

On June 15, 2022 the European Society for Organ Transplant (ESOT), issued a joint statement together with the European Kidney Health Alliance (EKHA), European Cancer Patients Coalition (ECPC) and Union Therapeutics calling on the European Commission, Parliament, and the Council to fully integrate the systematic protection of immunocompromised patients in their response and preparedness efforts

Joint statement on the need for improved protection and prevention for immunocompromised patients in the context the COVID-19 pandemic, European Society for Organ Transplant (ESOT) Read Post »

May 20, 2022 EURORDIS live webinar on equitable access to COVID-19 vaccines for vulnerable populations. Recording now available

In case you missed the European Organisation for Rare Diseases (EURORDIS)’s live event on equity in access to COVID-19 vaccines you can listen to the presentations by top vaccine expert Francois Houÿez and EURORDIS CEO Yann Le Cam on the EURORDIS YouTube channel at this link

May 20, 2022 EURORDIS live webinar on equitable access to COVID-19 vaccines for vulnerable populations. Recording now available Read Post »

The European Patient Academy on Therapeutic Innovation (EUPATI) Toolbox on Patient Engagement in Regulatory Affairs

The European Patients’ Academy on Therapeutic Innovation (EUPATI) is a multi-stakeholder public-private partnership established as an independent non-profit Foundation in the Netherlands.     The EUPATI Toolbox contains resources to assist patient engagement on diffferent : Basics of Medicine R&D, Clinical Development/Trials, Drug Discovery, Personalised Medicine, Regulatory Affairs, Benefit and Risk Assessment, HTA, Pharmaceutical Development,

The European Patient Academy on Therapeutic Innovation (EUPATI) Toolbox on Patient Engagement in Regulatory Affairs Read Post »

Participation in pulmonary hypertension support group improves patient-reported health quality outcomes: a patient and caregiver survey”, Pulmonary Circulation

A patient and carer survey was conducted in the USA with the aim of determining if participation in a pulmonary hypertension support group has a significant effect on quality of life (QOL) in a population of patients with pulmonary hypertension and their caregivers using the emPHasis-10 questionnaire. 165 subjects were enrolled in the study; 122

Participation in pulmonary hypertension support group improves patient-reported health quality outcomes: a patient and caregiver survey”, Pulmonary Circulation Read Post »

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