Abstract Improved care in pulmonary arterial hypertension has led to increased longevity for patients, with a paralleled evolution in the nature of their needs. There is more focus on the impact of the disease on their day-to-day activities and quality of life, and a holistic approach is coming to the front of pulmonary arterial hypertension […]
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
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.
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
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
Beacon is a UK-based non-profit organisation that is building a united rare disease community with patient groups at its heart. Their patient group trainings aim to help these often small and voluntary organisations to form, grow, and professionalise. Their events and trainings also give patient groups the opportunity to connect and collaborate with others across
Patient group trainings at Beacon, a UK-based non-profit organisation for rare diseases Read Post »
“Realistic medicine” puts the person receiving health and social care at the centre of decisions made about their care. The term Realistic Medicine was first introduced by Scotland’s Chief Medical Officer, Catherine Calderwood, in her annual report from 2016 and is being embedded across Scotland, championed by local and national clinical leaders. The Realistic Medicine
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
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 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,
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
An article titled “Physicians’ and patients’ expectations of therapies for pulmonary arterial hypertension: where do they meet?”, published in the European Respiratory Review, the authors say that improved care in pulmonary arterial hypertension has led to increased longevity for patients, with a paralleled evolution in the nature of their needs. There is more focus on
