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 May 5, the Pulmonary Hypertension Awareness Day, in 2022, HTaPFrance released the French version of a “Pulmonary Hypertension conversation kit” developed by Janssen, as part of the PHuman project , in collaboration with pulmonary hypertension patient associations around the world. The aim is to help patients better understand the condition and
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
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
I’m B J-N , 42 years old living with my significant other. We don’t have any children. In my childhood and youth I was always very sporty and active. I’m into athletics, children’s gymnastics and finally even competitive gymnastics. I started horseback riding when I was 13. But even then I was always more susceptible
My life with pulmonary arterial hypertension and rheumatism, a patient story Read Post »
The PAH Initiative was established by United Therapeutics with the aim of providing knowledge and inspiration based on science and research in pulmonary arterial hypertension today. Here you can find interesting information on pulmonary arterial hypertension, treatments and life style advice as well as patient testimonials. The “Learning Library” section of the PAH initiative contains useful
Three patient representatives (Ralf Schmiedel, Pisana Ferrari, Hans-Dieter Kulla) contributed to the study and article. The first two are patients having undergone lung transplant, Mr Kulla is the President of ph e.v., German PH association. The other authors are Karen M. Olsson, Tanja Meltendorf, Manuel J Richter, Jan Fuge, Jan Christopher Kamp, Da-Hee Park, Henning
Marc Humbert, M.D., Ph.D., Vallerie McLaughlin, M.D., J. Simon R. Gibbs, M.D., Mardi Gomberg-Maitland, M.D., Marius M. Hoeper, M.D., Ioana R. Preston, M.D., Rogerio Souza, M.D., Ph.D., Aaron Waxman, M.D., Ph.D., Pilar Escribano Subias, M.D., Ph.D., Jeremy Feldman, M.D., Gisela Meyer, M.D., David Montani, M.D., Ph.D., et al., “Sotatercept for the Treatment of Pulmonary Arterial
PH Human, part of the JanssenWithMe digital platform, was created in partnership with the pulmonary hypertension patient community and is dedicated to supporting people with the condition. It has a particular focus on pulmonary arterial hypertension (Group 1 WHO classification of pulmonary hypertension). It helps share real-life experiences from people living with pulmonary arterial hypertension
This booklet developed by by AIPI, Italian pulmonary hypertension association, contains pratical advice and tips for day-to-day life with pulmonary arterial hypertension. It stresses the importance of being organised and reserving one’s energies on what really matters. The condition has an impact on many aspects of life and relationships, so it is important to involve
Educational video by the French pulmonary hypertension association HTAPFrance which contains interviews with top pulmonary hypertension health care professionals and patients at three of the main pulmonary hypertension expert centers in France. You can view the video at this link
Rosie Matthysen was a pulmonary hypertension patient and a patient advocate. She was the founder of HTAP Belgique, the Belgian francophone pulmonary hypertension association, one of the founding members of PHA Europe. In this touching video poste on the PHA EUROPE YouTube channel Rosie tells her story and tells us about her life with pulmonary
Rosie’s “Breathtaking Story”, submitted by the Belgian French association HTAP Belgique Read Post »
Pulmonary arterial hypertension explained in simple words, with excellent visuals, in a French educational video posted on the HTAPFrance YouTube channel.
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
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
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 »
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
