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,
