European Respiratory Society (ERS) web event on “Living with rare respiratory diseases through the COVID-19 pandemic”

This live online discussion organised by the European Respiratory Society (ERS) was held on March 23, 2022, and focused on the experiences and learnings of specialists and patients in the fields of idiopathic pulmonary fibrosis, pulmonary hypertension, cystic fibrosis and bronchiectasis ,since the emergence of COVID-19. ERS President Elect Professor Marc Humbert and European Respiratory […]

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“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

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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

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Live web event on “Improving lung health through the future European Health Data Space”, MEP Lung Health Group

On February 8 2022 the MEP Lung Health Group organised a virtual event on “Improving lung health through the future European Health Data Space”, hosted by the Group members Co-Chair MEPs Manuel Pizarro (S&D – Portugal) and Sara Cerdas (S&D – Portugal). Panelists included EU policy makers, digital health experts, healthcare professionals, and patient representatives

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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 »

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

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A research aims to determine reliability of blood samples taken by PH patients at home for remote monitoring, January 29, 2022

New research at Royal Brompton and Harefield hospitals in the U.K. will evaluate whether the levels of NT-proBNP, a heart damage biomarker that serves as a prognostic marker of pulmonary hypertension, can be accurately measured in a finger-prick blood sample that can be taken by patients at home and sent by mail to laboratories (this

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“What’s next for digital health after COVID-19?”, MedTech Views

What’s next for digital health after COVID-19? Here is an interesting article from MedTechViews by Naveed Khan, Director of Commercial and Business Development/Digital Health at Biotronik. The author says there is no doubt the pandemic has accelerated digital health but, for new innovations to truly work for both physicians and patients, help is needed to

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Results of the 2nd International Organ Donation Cartoon competition!

What an amazing initiative to raise awareness of organ donation and transplant! Well done to the Turkish patient associations and organisations that were involved in its organisation, including our friends from the PAHSSc, the Turkish pulmonary hypertension association! Hundreds of wonderful, creative, touching and meaningful cartoons were submitted from all over the world, check them

Results of the 2nd International Organ Donation Cartoon competition! 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 »

Living with an “invisible” disease: share your pulmonary hypertension story to raise awareness and help others on the same journey

Disabilities are often not obvious to the eye, as the infographic of the cover photo eloquently illustrates (source: LinkedIn post by Pam Cusick, Senior Vice President at Rare Patient Voice). This the case with many rare and chronic disease patients, including pulmonary hypertension. Behaviours of people with invisible illnesses may be hard for others to

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PAHSSc, the Turkish PH association, launches Nefes, its first monthly newsletter!

Congrats to our friends from PAHSSc, the Turkish PH patient association, for the first edition of their new magazine “Nefes” (Breath), 60 pages of interesting information. This issue focuses on the topic of lung transplantation, with testimonials of two patients, reflections of Prof. Lewis Rubin, MD., Prof Mehmet Akbulut, MD., Dr. Gültekin Hoş, MD. and

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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

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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 »

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 »

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