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 »

Understanding right heart catheterisation, the “gold standard” test to diagnose pulmonary hypertension: a new resource by the UK Pulmonary Hypertension Association, PHA UK

The PHA UK has added new information to their website area that’s dedicated to right heart catheterisation procedure, check it out at this link. Cardiac catheterisation is known as the ‘gold standard’ test to diagnose pulmonary hypertension. It is a procedure that is used to study the right side of the heart and it is

Understanding right heart catheterisation, the “gold standard” test to diagnose pulmonary hypertension: a new resource by the UK Pulmonary Hypertension Association, PHA UK Read Post »

Launch of “Lez Zorganes”, a French TikTok cartoon video campaign to promote organ donation among young people

A 2023 survey by the French Agence de la Biomédecine (Agency for Biomedicine) has found that 79% of 16-24 year-olds felt uninformed about organ donation. To address this, a new digital campaign has been launched, targeting young people in a lighthearted and engaging manner to provide information about organ donation without the heaviness typically associated

Launch of “Lez Zorganes”, a French TikTok cartoon video campaign to promote organ donation among young people Read Post »

French patient shares helpful tips on how to “wear” a pump for IV infusion in a way that is discreet and how to talk about it to one’s colleagues, a video shared by HTaPFrance, the French Pulmonary Hypertension Association

Coline, a 34-year-old French pulmonary arterial hypertension patient living in Paris, diagnosed seven years ago, shares her tips on how to “style” a pump for intravenous infusion and on how to talk about it to one’s colleagues. The video is available at this link on the YouTube channel of HTaPFrance.

French patient shares helpful tips on how to “wear” a pump for IV infusion in a way that is discreet and how to talk about it to one’s colleagues, a video shared by HTaPFrance, the French Pulmonary Hypertension Association Read Post »

The recording of the recent informative webinar on pulmonary hypertension and nutrition, organized by the ANHP (Asociación Nacional de Hipertensión Pulmonar), is now accessible

On 13 April 2023 the Asociación Nacional de Hipertensión Pulmonar, Spanish pulmonary hypertesion association, hosted a webinar titled “Pulmonary hypertension and nutrition: can diet help in the treatment of PH?”, featuring as speaker Ms Marina Sisso, a dietician and clinical nutritionist at the Hospital Clínic de Barcelona, specialised in the area of Pulmonology and Cardiology.

The recording of the recent informative webinar on pulmonary hypertension and nutrition, organized by the ANHP (Asociación Nacional de Hipertensión Pulmonar), is now accessible Read Post »

The Pulmonary Hypertension Association of Canada, PHA Canada, invites you to celebrate15 years of inspiration at this year’s National Community Conference, June 9-10, 2023 

Warmest congratulations to PHA Canada for its 15th anniversary! Check out their anniversary video on YouTube In English at this link in French at this link PHA Canada’s National PH Community Conference is coming up soon, on June 9-10, in Ottawa. Select conference sessions will be made available via Zoom. Here is the link to

The Pulmonary Hypertension Association of Canada, PHA Canada, invites you to celebrate15 years of inspiration at this year’s National Community Conference, June 9-10, 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 »

A video posted on Instagram explains how pulmonary circulation works in a very unusual, creative way, January 27, 2023

The video, posted by mukuls_pharmacology, an educational Instagram account, shows how blood flows through the heart into the lungs (persons dressed in blue) and then back from the lungs, after being enriched with oxygen (persons dressed in red), into the body. Interesting! See video at this link “POUMONS” means “LUNGS” in English

A video posted on Instagram explains how pulmonary circulation works in a very unusual, creative way, January 27, 2023 Read Post »

First therapy to treat transplant patients with post-transplant lymphoproliferative disease approved for marketing authorisation by the European Medicines Agency (EMA), October 14, 2022

On October 14, 2022, the European Medicines Agency (EMA) announced that it has recommended a marketing authorisation in the EU for Ebvallo (tabelecleucel), a medicine used to treat adults and children from 2 years of age who, after receiving an organ, or a bone marrow-transplantation, develop a blood cancer called Epstein-Barr virus positive post-transplant lymphoproliferative disease

First therapy to treat transplant patients with post-transplant lymphoproliferative disease approved for marketing authorisation by the European Medicines Agency (EMA), October 14, 2022 Read Post »

How do clinical trials work? Here is a video by top pulmonary hypertension medical expert Vallerie McLaughlin that explains it all! A phaware global initiative

Vallerie McLaughlin, MD from Michigan Medicine’s Cardiovascular Center, discusses the basics of clinical trials in this very informative video care of phaware. Check out the video on the phaware YouTube channel at this link Learn more about phaware at this link

How do clinical trials work? Here is a video by top pulmonary hypertension medical expert Vallerie McLaughlin that explains it all! A phaware global initiative 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 »

“Regards croisés”, a video with testimonials from pulmonary arterial hypertension patients on intra-venous 24/7 prostanoid treatment, by the French pulmonary hypertension association, HTaPFrance

On the occasion of the 2022 edition of the Pulmonary Hypertension Awareness Day, on May 5, HTaPFrance released a short film titled “Regards croisés”, which presents three people who currently have or have had epoprostenol treatment intravenously, using a pump and a centralised catheter. They share their experience with the pump in day to day

“Regards croisés”, a video with testimonials from pulmonary arterial hypertension patients on intra-venous 24/7 prostanoid treatment, by the French pulmonary hypertension association, HTaPFrance Read Post »

Pulmonary arterial hypertension French educational video by Respifil, the French health network for rare pulmonary diseases

Excellent educational video in French language about pulmonary arterial hypertension developed by Respifil. Discusses causes, symptoms, diagnostic work up, treatments. Features interviews with French pulmonary hypertension experts from the French Network of pulmonary hypertension (Pulmotension) including Prof. Marc Humbert and Olivier Sitbon from the University Hospitals of Paris-Sud Bicetre, Le Kremlin-Bicetre (France), and a pulmonary

Pulmonary arterial hypertension French educational video by Respifil, the French health network for rare pulmonary diseases Read Post »

“The Added Value of Patient Engagement in Early Dialogue at the European Medicines Agency (EMA): Scientific Advice as a Case Study”, Frontiers in Medicine

  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

“The Added Value of Patient Engagement in Early Dialogue at the European Medicines Agency (EMA): Scientific Advice as a Case Study”, Frontiers in Medicine Read Post »

The European Medicines Agency (EMA) updates its engagement framework with patients, consumers and their organisations

The European Medicines Agency (EMA) engagement framework aims to Facilitate participation of patients and consumers in regulatory activities all along the entire lifecycle of medicines; Foster the development of guidance and methodologies to increase collection and use of relevant patient experience data in the context of regulatory decision making; Ensure that patients, consumers and their

The European Medicines Agency (EMA) updates its engagement framework with patients, consumers and their organisations Read Post »

The EU Clinical Trials Regulation came into force 31st of January 2022

The European Union (EU) pharmaceutical legislation known as the Clinical Trials Regulation comes into force today, the 31st of January 2022. It aims to ensure the EU offers an attractive and favourable environment for carrying out clinical research on a large scale, with high standards of public transparency and safety for clinical trial participants. Prior to

The EU Clinical Trials Regulation came into force 31st of January 2022 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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