The Argentinian Pulmonary Hypertension Association – Hipertension Pulmónar Argentina – has just released the tenth edition of the RESPIRO2 Magazine, featuring important information about pulmonary hypertension. This edition features articles about: Read this edition of RESPORO2 and past editions at this link on the Hipertension Pulmónar Argentina website.
The European Lung Foundation (EF) has just updated its page on pulmonary hypertension to include translations into its nine core languages.
What does it feel like to carry out normal every day activities like ironing a shirt or sweeping the floor when you have pulmonary hypertension? The Asociación Nacional de Hipertensión Pulmonar ANHP will set up a booth on May 6, at the Hospital Universitario Puerta De Hierro Majadahonda, from 9:00 a.m. to 2:00 p.m., where visitors will be
The 2023 awareness campaign “Viaggio alla scoperta della PAH” (A trip to discover pulmonary arterial hypertension), has won the Life Sciences Excellence award for the “Best Patient Advocacy Digital Campaign of the Year”! A very important recognition for this collaborative effort by AIPI Italian Pulmonary Hypertension Association, AMIP Associazione Malati Ipertensione Polmonare, GILS – Gruppo Italiano per la
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
Important news for French-speaking pulmonary hypertension patients in Belgium and, indeed, in the rest of the world! PH Belgium – Pulmonale Hypertensie vzw, in collaboration with HTAP Belgique and Prof. Dr. Jean-Luc Vachiery is organising a series of webinars in French addressing a wide range of topics related to pulmonary hypertension including R&D, multidisciplinary care, the role of nurses in the coordination
Vittorio Vivenzio, President of the Italian Pulmonary Hypertension Association AMIP ODV, has released a new educational video on the association’s social media platforms. The video offers an easily comprehensible and “light” approach to understanding the intricate mechanisms behind the condition and the challenges of obtaining a timely and accurate diagnosis. It underscores the significance of
As dedicated volunteers for pulmonary hypertension associations, we know just how much work there is in putting together our newsletters. Beyond content creation, it involves research, writing, photo selection, layout design, printing, and distribution. Newsletters connect communities, providing updates on crucial developments. Our mission at PH-KSP is to break barriers, fostering the exchange of knowledge
“Navigating Pulmonary Hypertension” is a resource for individuals living with pulmonary hypertension and their loved ones. The 60-page booklet aims to provide answers, support, and hope during the first weeks, months, or years after receiving a pulmonary hypertension diagnosis. The publication offers an overview of the diagnosis, treatment, symptoms, and quality of life. It also
AIPI, the Italian Pulmonary Hypertension Association, has just released a new booklet in Italian on pulmonary arterial hypertension, featuring a series of questions and answers, interwoven with images. Accompanying the booklet is a glossary of frequently used terms. The booklet aims to provide patients, family members and carers with concise and easy-to-understand information about pulmonary
The Directorate-General for Health and Food Safety of the European Commission has just issued a new booklet on European Reference Networks (ERNs). European Reference Networks are virtual networks connecting healthcare providers, professionals and patient organisations across the European Union (EU) and Norway. The rationale behind their establishment is that no country alone has the knowledge
November 30, 2 pm EST The first webinar, “Hope Through Research in Pulmonary Hypertension: Emerging Developments,” will review emerging pulmonary hypertension research developments and the potential impact they’ll have on the PH community. December 14, 2 pm EST The second webinar, “Hope Through Research in Pulmonary Hypertension: Clinical Trials,” will discuss the clinical trial process,
On the occasion of Rare Disease Day 2022 EURORDIS, the European Rare Disease Organisation, in collaboration with its national alliance rare disease patient organisation partners, put together a “School toolkit” to explain living with a rare disease to children and teenagers. These resources were translated in over 20 languages. One of these resources “A Friendship
Did you know that the lay summary of the European Society of Cardiology and European Respiratory Society clinical guidelines on pulmonary hypertension is now available in 11 languages: English, French, German, Greek, Italian, Polish, Portuguese (Portugal), Russian, Spanish, Romanian, Ukrainian. The English version of the lay summary was developed with the active collaboration of the two
“EUPATI” stands for European Patient Academy on Therapeutic Innovation. Its mission is to provide accessible, innovative and inclusive education that empowers patients and patient representatives with the right knowledge, skills and competencies to effectively engage and partner with all other stakeholders in medicines R&D. The EUPATI Toolbox is organised in two main areas: Medicines R&D
Prof. Serpil Erzurum is Cleveland Clinic’s Chief Research and Academic Officer and Chair of the Lerner Research Institute. Dr. Erzurum has won numerous awards, has published more than 300 articles, and is among the top 1% cited researchers in the world. This interview was originally published in English on Nefes, the magazine of the Turkish
Prof. Lewis J. Rubin with Kamil Hamidullah, immediate past President of the PAHSSc This interview was originally published in Turkish on Nefes, the magazine of the Turkish Pulmonary Hypertension Association PAHSSc in December 2021.Our sincerest thanks go to our friends and colleagues at the PAHSSc for graciously allowing us to republish this interview and share with
This interview was originally published in Turkish on Nefes, the magazine of the Turkish Pulmonary Hypertension Association PAHSSc, in June 2022. We extend our sincerest thanks to our friends and colleagues at the PAHSSc for graciously permitting us to republish and share it with the wider pulmonary hypertension community. Professor Maurice Beghetti is Head of
Photo: Prof. Sean Gaine with Kamil Hamidullah, immediate Past President of PAHSSc, the Turkish Pulmonary Hypertension Association. This interview was originally published in Turkish on Nefes, the magazine of the Turkish Pulmonary Hypertension Association PAHSSc, on the March 2023 edition. Our sincerest thanks go to the PAHSSc for very generously sharing this interview with the
The Respiratory Health, Allergy, and Atopy Summit (“SAREAL” as it reads its acronym in Spanish) brings together organizations working for chronic respiratory diseases (prevalent and rare), allergic, and atopic conditions to explore the underlying connection and commonalities. This year it is taking place on August 11 and 12 in Punta Cana, the Dominican Republic. It
