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
During the COVID-19 pandemic, many health care systems suspended their non-urgent activities. Pulmonary Hypertension patients were subjected to the same rules as other patients during the COVID-19 pandemic, with no prioritised care despite their rare and severe condition. A consortium composed of pulmonary hypertension patient associations and scientific societies was created to launch the PH-CARE-COVID survey,
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
On June 15, 2022 the European Society for Organ Transplant (ESOT), issued a joint statement together with the European Kidney Health Alliance (EKHA), European Cancer Patients Coalition (ECPC) and Union Therapeutics calling on the European Commission, Parliament, and the Council to fully integrate the systematic protection of immunocompromised patients in their response and preparedness efforts
This booklet published by AIPI, the Italian Pulmonary hypertension association, contains an overview of the different forms of pulmonary hypertension and more specific information about pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension, including treatments and surgical solutions. The booklet can be downloaded from the AIPI website at this link Translation into other languages of
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,
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
A very interesting article about epoprostenol, the first ever therapy to be approved for the treatment of pulmonary arterial hypertension. The development of epoprostenol followed on from the discovery of endogenous prostacyclins in the vasculature by Sir Salvator Moncada et al. in the 1970s. Shortly after this, epoprostenol was synthesised and shown to have anti-platelet activity
View the video at this link on the Royal Free London NHS Foundation Trust YouTube channel
A large-scale international survey carried out in 2011 investigated four key areas affected by pulmonary arterial hypertension: physical and practical, emotional, social, and information needs and provided new insights into patients’ and carers’ experiences of living with the disease. Citation “Understanding the impact of pulmonary arterial hypertension on patients’ and carers’ lives”, Loïc Guillevin, Iain
The pulmonary arterial hypertension “Patient Charter” is based on the 2015 European Society of Cardiology/European Respiratory Society (ESC/ERS) guidelines, which are used internationally, and was developed from the outputs of a meeting held in Berlin, Germany, in March 2019. The meeting participants included patients, patient advocacy group representatives and healthcare professionals from the pulmonary arterial
Pulmonary Arterial Hypertension Patient Charter 2020 Read Post »
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
