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 […]
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
The European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex on rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources. The first ERNs were launched in 2017, involving more than 900 highly-specialised healthcare units from over 300 hospitals in 26
Disabilities are often not obvious to the eye, as the infographic of the cover photo eloquently illustrates (source: LinkedIn post by Pam Cusick, Senior Vice President at Rare Patient Voice). This the case with many rare and chronic disease patients, including pulmonary hypertension. Behaviours of people with invisible illnesses may be hard for others to
