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 […]
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
“What’s next for digital health after COVID-19?”, MedTech Views Read Post »
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 »
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
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
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
PAHSSc, the Turkish PH association, launches Nefes, its first monthly newsletter! Read Post »
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
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
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
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
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
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
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,
Mélanie Gallant-Dewavrin shares her views on the main challenges for pulmonary hypertension patients and the key role of patient associations during an interview aired on the occasion of Pulmonary Hypertension Day, May 5. Founded in 1996, HTaPFrance is the longest standing PH patient association in Europe, together with ph e.v., the German PH patient association,
