The European Lung Foundation (EF) has just updated its page on pulmonary hypertension to include translations into its nine core languages.
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
Coming up on March the 1st, 13:30 – 17:30, the German Pulmonary Hypertension Association’s Pulmonale Hypertonie E.V. ‘s meeting in Hamburg. A very comprehensive program, impressive panel of speakers! Not to be missed! Hans-Dieter KullaProf. Dr. Werner SeegerProf. Dr. Ardeshir GhofraniProf. Dr. Khodr TelloDr. Athiththan YogeswaranDr. Nils KremerProf Dr Matthias HeckerProf. Dr. Karsten KrügerProf. Dr. Natascha Sommer Find out
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
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
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
The German pulmonary hypertension association, ph e.v., held the 24th edition of its Annual Patient Meeting on October 20-22, 2023, at the Education Center of the Hessian State Sports Association in Frankfurt am Main. The ph e.v. annual meetings consistently draw a very large number of participants from all over the country. The program combines
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
Gabriele, a 47-year-old Italian national residing in Brescia, bravely opens up about his personal journey with Chronic Thromboembolic Pulmonary Hypertension (CTEPH), aiming to raise crucial awareness within the pulmonary hypertension community. By sharing his experience, he hopes to shed light on this condition and its impact, offering support and insights to those who may be
The European Communication on Research Awareness Needs, the ECRAN project is an online platform that is available in five languages in addition to English (German, Italian, French, Polish, Spanish), which contains a wealth of information about clinical trials, and explains everything patients need to know in order to take part in them. Rea more on
“Eroi anonimi” (“Anonymous heroes”) is an Italian online platform aimed at the promotion of organ donation among the general population. The slogan of this awareness initiative is “You can be a hero even without superpowers”. The platform features information about the importance of organ donation, on the different procedures that are used in Italy to
Eva Otter has been living with pulmonary hypertension for twenty years. She was diagnosed with pulmonary hypertension in 2003. At that time she was a busy medical laboratory manager in Lower Austria and also supported her boss at conferences, with publications etc.In this article Eva shares her patient journey over the past years, how she
Yes, I am sick, but I want to live!” – These are the words of Bianca Jung-Niederberger. She suffers from lupus and as a result developed pulmonary hypertension. In the following article, Bianca talks about her path to diagnosis and how she fought her way back into life afterwards. Link to article
“Yes I am sick but I want to live!” – Bianca Jung-Niederberger Read Post »
Nonprofit Team PHenomenal Hope launched its new educational website “Learn Live Breathe PH” on Rare Disease Day, February 28, 2023. Written by experts in the field the platform was created to help pulmonary hypertension patients navigate the complexities of living with this chronic illness and feel empowered by relevant, scientific information. The website provides guidance
