Joint statement on the need for improved protection and prevention for immunocompromised patients in the context the COVID-19 pandemic, European Society for Organ Transplant (ESOT)

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 […]

Joint statement on the need for improved protection and prevention for immunocompromised patients in the context the COVID-19 pandemic, European Society for Organ Transplant (ESOT) Read Post »

Patient booklet on pulmonary hypertension by AIPI, the Italian Pulmonary hypertension association

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

Patient booklet on pulmonary hypertension by AIPI, the Italian Pulmonary hypertension association Read Post »

May 20, 2022 EURORDIS live webinar on equitable access to COVID-19 vaccines for vulnerable populations. Recording now available

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

May 20, 2022 EURORDIS live webinar on equitable access to COVID-19 vaccines for vulnerable populations. Recording now available Read Post »

The European Patient Academy on Therapeutic Innovation (EUPATI) Toolbox on Patient Engagement in Regulatory Affairs

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,

The European Patient Academy on Therapeutic Innovation (EUPATI) Toolbox on Patient Engagement in Regulatory Affairs Read Post »

Interview with Mélanie Gallant-Dewavrin, director of HTaPFrance, for Pulmonary Hypertension Day 2021

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,

Interview with Mélanie Gallant-Dewavrin, director of HTaPFrance, for Pulmonary Hypertension Day 2021 Read Post »

Participation in pulmonary hypertension support group improves patient-reported health quality outcomes: a patient and caregiver survey”, Pulmonary Circulation

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

Participation in pulmonary hypertension support group improves patient-reported health quality outcomes: a patient and caregiver survey”, Pulmonary Circulation Read Post »

“Pulmonary Hypertension-Get informed and inform”: educational video by the Greek association for pulmonary hypertension, Hellenic PH

“Pulmonary Hypertension-Get informed and inform” is an educational video about pulmonary hypertension. It can be viewed on the Greek association for Pulmonary Hypertension, Hellenic PH’s Youtube channel at this link

“Pulmonary Hypertension-Get informed and inform”: educational video by the Greek association for pulmonary hypertension, Hellenic PH Read Post »

“Epoprostenol and pulmonary arterial hypertension: 20 years of clinical experience”, European Respiratory Review

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

“Epoprostenol and pulmonary arterial hypertension: 20 years of clinical experience”, European Respiratory Review Read Post »

“Understanding the impact of pulmonary arterial hypertension on patients’ and carers’ lives”, a large-scale international survey on the impact of the disease on patients’ and carers’ lives”, European Respiratory Review

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

“Understanding the impact of pulmonary arterial hypertension on patients’ and carers’ lives”, a large-scale international survey on the impact of the disease on patients’ and carers’ lives”, European Respiratory Review Read Post »

Pulmonary Arterial Hypertension Patient Charter 2020

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 »

“Physicians’ and patients’ expectations of therapies for pulmonary arterial hypertension: where do they meet?”, European Respiratory Review, December 1, 2014

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

“Physicians’ and patients’ expectations of therapies for pulmonary arterial hypertension: where do they meet?”, European Respiratory Review, December 1, 2014 Read Post »

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