“First five minutes”: building patient trust, a PHAWARE GLOBAL podcast, July 22, 2025 

In episode 530 of the phaware® podcast Drs. Victor Test, Deborah Levine and Rodolfo Estrada discuss CHEST’s First 5 Minutes® program, which helps medical professionals build the skills that lead to a positive relationship with patients from the get-go, creating trust and developing empathy to build rapid rapport and communicate with patients. The goal is to […]

“First five minutes”: building patient trust, a PHAWARE GLOBAL podcast, July 22, 2025  Read Post »

Kick-off meeting of the EU Joint Action JARDIN on the integration of European Reference Networks (ERNs) into national health systems 

The European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources. 24 ERNs are working on a range of thematic issues, including ERN-Lung, the European Reference Center for Rare Lung Diseases, which

Kick-off meeting of the EU Joint Action JARDIN on the integration of European Reference Networks (ERNs) into national health systems  Read Post »

Excellent educational resources about remote care and use of digital tools by the European Lung Foundation

The European Lung Foundation educational resources about remote care and the use of digital tools include text and videos covering: 🔹 Video calls for consultations🔹 Sharing photos or videos🔹 Virtual wards and home monitoring🔹 Online rehabilitation and activity sessions🔹 Online diaries, journals or questionnaires🔹 Online questionnaires🔹 Wearable devices🔹 Health apps🔹 Benefits of digital healthcare technologies

Excellent educational resources about remote care and use of digital tools by the European Lung Foundation Read Post »

The European Medicines Agency (EMA) has issued a call for patient representatives to join the Committee for Orphan Medicinal Products (COMP)

The European Commission has launched a call for expressions of interest to represent patients’ organisations in European Medicines Agency’s (EMA) Committee for Orphan Medicinal Products (COMP). This is a very important opportunity for patients to have a role in the approval of orphan medicinal products! The call aims to fill three positions nominated by the

The European Medicines Agency (EMA) has issued a call for patient representatives to join the Committee for Orphan Medicinal Products (COMP) Read Post »

Slides and recording of our webinar on “Patients as Partners and Shared Decision Making” -June 6, 2023

Download the webinar slides here Learning objectives of the webinar Our goal is to empower individuals living with pulmonary hypertension and their families, equipping them with actionable insights and practical knowledge. Transcript ARADIGM FOR PULMONARY HYPERTENSION CARE”, June 6, 2023 NB. This transcript can be translated into your preferred language – use orange button at

Slides and recording of our webinar on “Patients as Partners and Shared Decision Making” -June 6, 2023 Read Post »

Proposed revision of EU pharmaceutical laws, released on April 26, 2023, will contribute to making the EU regulatory framework more patient-centred

On Wednesday April 26, 2023, the European Commission adopted a proposal for a new Directive and a new Regulation, which revise and replace the existing general pharmaceutical legislation. The EU Commission’s proposed revisions include proposals to update the EU’s Regulations on Orphan Medicinal Products and Paediatric Medicines, which are very important to Europe’s population of

Proposed revision of EU pharmaceutical laws, released on April 26, 2023, will contribute to making the EU regulatory framework more patient-centred Read Post »

Understanding more about the role of artificial intelligence in the diagnosis and management of pulmonary hypertension, a video developed by the UK Pulmonary Hypertension Association (PHA UK), March 28, 2023

The UK Pulmonary Hypertension Association (PHA UK) asked the community what they wanted to know about how artificial intelligence might affect diagnosis and management of pulmonary hypertension, and then put their questions to Dr Andy Swift, a Cardiothoracic Radiologist working with the Sheffield Pulmonary Vascular Disease Unit. Here is the link to the video

Understanding more about the role of artificial intelligence in the diagnosis and management of pulmonary hypertension, a video developed by the UK Pulmonary Hypertension Association (PHA UK), March 28, 2023 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 »

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