Study on Patient-Reported Outcome Measures for Assessment of Health-Related Quality of Life in Patients With Pulmonary Hypertension, CHEST, November 2022

Pulmonary hypertension significantly affects patients’ quality of life. A review of published literature and clinical trials in pulmonary hypertension was conducted by the authors of this study to identify and evaluate patient-reported outcome measures (PROMs) that assess pulmonary hypertension-specific HRQoL for use in clinical studies. To assess treatment benefits and patient experiences, various PROMs were […]

Study on Patient-Reported Outcome Measures for Assessment of Health-Related Quality of Life in Patients With Pulmonary Hypertension, CHEST, November 2022 Read Post »

The US Pulmonary Hypertension Association, PHA, calls on the community to support legislation that would limit step-therapy requirements

Sharing from the PHA’s Instagram page the news that that the “Safe Step Act” is moving to the US Senate floor for the first time and aims to limit step-therapy requirements. Current insurance policies in US require people to try less expensive treatments than what their doctors prescribe first. The PHA points out that for

The US Pulmonary Hypertension Association, PHA, calls on the community to support legislation that would limit step-therapy requirements Read Post »

The Fundación Contra la Hipertensión Pulmonar, Spain, shares an important resource with the PH-KSP, a new book by a pulmonary arterial hypertension patient titled “The Expert and Informed Patient”

Salvador Calderón, a patient affected by Pulmonary Hypertension and a volunteer with the Foundation against Pulmonary Hypertension in Spain, has released his third book, titled “The Expert and Informed Patient.” This compelling narrative portrays the journey of a patient through all stages of pulmonary hypertension, highlighting the constant struggle to improve the quality of life

The Fundación Contra la Hipertensión Pulmonar, Spain, shares an important resource with the PH-KSP, a new book by a pulmonary arterial hypertension patient titled “The Expert and Informed Patient” Read Post »

“PH Roundtable: Pros and Cons of the 2022 ERS/ESC Guidelines: Practicality vs Real World View”, Advances in Pulmonary Hypertension, April 13, 2023

This article, published in Advances in Pulmonary Hypertension, refers to a round table covened to discuss the 2022 joint ERS/ESC guidelines on pulmonary hypertension. The round table was attended by Dr Thenappan Thenappan, University of Minnesota, Minneapolis; Dr Marc Humbert, Université Paris-Saclay, Paris; Dr Vallerie McLaughlin, University of Michigan, Ann Arbor; Dr Hilary DuBrock, Mayo

“PH Roundtable: Pros and Cons of the 2022 ERS/ESC Guidelines: Practicality vs Real World View”, Advances in Pulmonary Hypertension, April 13, 2023 Read Post »

The European Patients’ Forum (EPF) “Advocacy 101” offers a tailored training course to help build a solid base of knowledge and understanding of patient advocacy

The European Patients’ Forum (EPF), has recently launched a training course for young patient advocates, “Advocacy 101”. The EPF is an umbrella organisation of patient organisations across Europe and across disease-areas. “Advocacy 101” is a free-of-charge, tailored training course built to help gain a solid base of knowledge and understanding of patient advocacy. Some of the key questions

The European Patients’ Forum (EPF) “Advocacy 101” offers a tailored training course to help build a solid base of knowledge and understanding of patient advocacy Read Post »

“Considerations When Selecting Patient-Reported Outcome Measures for Assessment of Health-Related Quality of Life in Patients With Pulmonary Hypertension: A Narrative Review”, CHEST

The authors of this study on patient-reported outcome measures (PROMs), published in CHEST in November 2022, conducted a review of the published literature and clinical trials in pulmonary hypertension to identify and evaluate PROMs that assess pulmonary hypertension-specific health related quality of life (HRQoL) for use in clinical studies. The PROMs analysed were the Cambridge

“Considerations When Selecting Patient-Reported Outcome Measures for Assessment of Health-Related Quality of Life in Patients With Pulmonary Hypertension: A Narrative Review”, CHEST Read Post »

“Patient engagement and self-management in pulmonary arterial hypertension”, European Respiratory Review

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

“Patient engagement and self-management in pulmonary arterial hypertension”, European Respiratory Review Read Post »

Dates for the European Rare Disease Organisation, EURORDIS, Summer School for Patient Advocates 2023 now announced: June 19-23, 2023, Barcelona

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.

Dates for the European Rare Disease Organisation, EURORDIS, Summer School for Patient Advocates 2023 now announced: June 19-23, 2023, Barcelona Read Post »

PHA Europe “Call to Action on the unmet needs of patients with pulmonary hypertension” launch event in the European Parliament, April 2022

PHA Europe organized an event in the EU Parliament on April 26, 2022 for the launch of its “Call to Action on the unmet needs of patients with pulmonary hypertension”. The event was hosted by MEP Istvan Ujhelyi (Hungary) and chaired by Prof. Marc Humbert (ERS President). The Call to Action is a revisit of

PHA Europe “Call to Action on the unmet needs of patients with pulmonary hypertension” launch event in the European Parliament, April 2022 Read Post »

COVID-19 vaccine response in solid organ transplant recipients: results from ORCHESTRA cohort study

To date, several reports have underlined low rates of antibody response to mRNA COVID-19 vaccines in solid organ transplant (SOT) recipients. According to the authors of an article titled “Evaluation of the Kinetics of Antibody Response to COVID-19 Vaccine in Solid Organ Transplant Recipients: The Prospective Multicenter ORCHESTRA Cohort” (1) previous studies assessing the antibody

COVID-19 vaccine response in solid organ transplant recipients: results from ORCHESTRA cohort study Read Post »

European Respiratory Society (ERS) web event on “Living with rare respiratory diseases through the COVID-19 pandemic”

This live online discussion organised by the European Respiratory Society (ERS) was held on March 23, 2022, and focused on the experiences and learnings of specialists and patients in the fields of idiopathic pulmonary fibrosis, pulmonary hypertension, cystic fibrosis and bronchiectasis ,since the emergence of COVID-19. ERS President Elect Professor Marc Humbert and European Respiratory

European Respiratory Society (ERS) web event on “Living with rare respiratory diseases through the COVID-19 pandemic” Read Post »

Patient group trainings at Beacon, a UK-based non-profit organisation for rare diseases

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 »

European Patients’ Academy on Therapeutic Innovation (EUPATI), a patient-led initiative to enhance knowledge of medicine R & D processes

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

European Patients’ Academy on Therapeutic Innovation (EUPATI), a patient-led initiative to enhance knowledge of medicine R & D processes Read Post »

An international patient survey on the care for pulmonary hypertension patients during the early phase of the COVID-19 pandemic, Orphanet Journal of Rare Diseases, May 2021

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,

An international patient survey on the care for pulmonary hypertension patients during the early phase of the COVID-19 pandemic, Orphanet Journal of Rare Diseases, May 2021 Read Post »

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 »

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 »

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 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 »

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