The Fundación Contra la Hipertensión Pulmonar, Spain, shares an important resource with the PH-KSP, a new book by a pulmonary arterial hypertension patient titled “The Expert and Informed Patient”

Salvador Calderón, a patient affected by Pulmonary Hypertension and a volunteer with the Foundation against Pulmonary Hypertension in Spain, has released his third book, titled “The Expert and Informed Patient.” This compelling narrative portrays the journey of a patient through all stages of pulmonary hypertension, highlighting the constant struggle to improve the quality of life […]

The Fundación Contra la Hipertensión Pulmonar, Spain, shares an important resource with the PH-KSP, a new book by a pulmonary arterial hypertension patient titled “The Expert and Informed Patient” 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 »

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 »

“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 »

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 »

In his speech at the CPLF, French Language Pulmonology Congress, Prof. Marc Humbert highlights the importance of expert center–patient association partnerships

The Congrès de Pneumologie de Langue Française (CPLF) is the 3rd largest world pulmonology congress, after the ATS (American Thoracic Society) and the ERS (European Respiratory Society). This year it was held from 27 to 29 January 2023 in the city of Marseille. Prof. Marc HUMBERT, President of the European Respiratory Society, coordinator of RespiFIL,

In his speech at the CPLF, French Language Pulmonology Congress, Prof. Marc Humbert highlights the importance of expert center–patient association partnerships Read Post »

Pisana Ferrari and Gergely Meszaros discuss their contribution to the new ESC/ERS pulmonary hypertension guidelines in an interview for the Belgian Flemish Association’s January 2023 newsletter

The Belgian Flemish Association, Pulmonale hypertentie vzw, has published an interview with patient advocates Gergely Meszaros (PHA Europe) and Pisana Ferrari (AIPI, Italian Pulmonary Hypertension Association, Italy) in the latest edition of their magazine “ADEMLOS”. In this interview Gergely and Pisana discuss their contribution to the new ESC/ERS pulmonary hypertension guidelines, and in particular: The

Pisana Ferrari and Gergely Meszaros discuss their contribution to the new ESC/ERS pulmonary hypertension guidelines in an interview for the Belgian Flemish Association’s January 2023 newsletter 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 »

“Why patient empowerment should be at the heart of organ transplantation: a personal perspective”, by Pisana Ferrari, in Hospital Health Care Europe, October 18, 2022

The European Society for Organ Transplantation (ESOT) invited Pisana Ferrari to share her personal perspective as a lung transplant patient on the importance of patient engagement throughout the transplant journey (20+ years) and on why strengthening the relationship between the patient and the healthcare professional is so crucial in enhancing the transplant patient experience. The

“Why patient empowerment should be at the heart of organ transplantation: a personal perspective”, by Pisana Ferrari, in Hospital Health Care Europe, October 18, 2022 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 »

“Building from patient experiences to deliver patient-focused healthcare systems in collaboration with patients”, Springer, July 19, 2022

As patients we are delighted to see that the importance and the added value of involving patients in health care decisions and policies is increasingly being recognised. In this very interesting article published on September 16, 2022, the authors note that the application of patient experience data to inform healthcare decisions is still an emerging

“Building from patient experiences to deliver patient-focused healthcare systems in collaboration with patients”, Springer, July 19, 2022 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 »

What are the European Reference Networks (ERNs) and why it is important that the pulmonary hypertension community participate in its work

The European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex on rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources. The first ERNs were launched in 2017, involving more than 900 highly-specialised healthcare units from over 300 hospitals in 26

What are the European Reference Networks (ERNs) and why it is important that the pulmonary hypertension community participate in its work 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 »

Patient input can be paramount in developing digital health products attending to their medical needs

The adoption of “patient design” is one of keys factors in the success of digital health companies according to Bertalan Meskó, MD, PhD, Director of The Medical Futurist Institute. In a recent article titled “Best Practices In Digital Health: 9 Keys To Build A Future-Ready Organisation”, he says that patients, who are the end-user of

Patient input can be paramount in developing digital health products attending to their medical needs 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 »

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