Coming up on March the 1st 2024, the German Pulmonary Hypertension Association (pulmonale hypertonie e.v.)’s meeting in Hamburg
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
Excellent educational resources about remote care and use of digital tools by the European Lung Foundation
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
A fresh booklet for those unfamiliar with European Reference Networks (ERNs) and their role in rare disease patient care, Novemebr 25, 2023
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
Scientific presentations, case studies and workshops at the German pulmonary hypertension association ph e.v.’s annual patient meeting, October 20-22, 2023
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
“A Friendship Story” a resource for children with pulmonary arterial hypertension by Serbian patient and author Danijela Pešić, with illustrations by Ivan Drajzl
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
The lay summary of the European Society of Cardiology and European Respiratory Society clinical guidelines on pulmonary hypertension is now available in 11 languages
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
Want to find out more about Medicines R & D and Patient Engagement? Check out the EUPATI Toolbox, now available in 14 languages!
“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
The basics of clinical trials and patient participation in an online platform developed by the EU-financed ECRAN project
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
Interview with Eva Otter, a pulmonary hypertension patient and President of PHA Europe, the European Pulmonary Hypertension Association, April 7, 2023
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!” – Bianca Jung-Niederberger
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
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Team PHenomenal Hope launches a new pulmonary hypertension educational website, “Learn Live Breathe PH”, on Rare Disease Day, February 28, 2023
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
My life with pulmonary arterial hypertension and rheumatism, a patient story
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 »
Life with pulmonary hypertenson, a Blog by Caro, a patient
My name is Carolin and I have been living with the rare, chronic disease pulmonary hypertension since August 2015. My diagnosis came 3 days after my church wedding, but the first symptoms started in November 2014, when I was travelling with my mum and a friend in Barcelona and quickly noticed that they were both
Life with pulmonary hypertenson, a Blog by Caro, a patient Read Post »
Schweizer PH-Verein (SPHV) für Menschen mit pulmonaler Hypertonie
Schweizer PH-Verein (SPHV) für Menschen mit pulmonaler Hypertonie Adress: Schweizer PH-Verein 8000 Zürich Switzerland Phone Number: +41 (0)79 385 74 04 Association President: Andrea Heini Uffer Association Email: info@lungenhochdruck.ch https://www.lungenhochdruck.ch/
Schweizer PH-Verein (SPHV) für Menschen mit pulmonaler Hypertonie Read Post »
“Mut im Herz”, Brave Heart, by Jennifer, a pulmonary arterial hypertension patient
My name is J and I am 27 years old and come from near Bamberg. Since 2006 I have been suffering from “Idiopathic Arterial Pulmonary Hypertension”. I was 11 years old when I received the diagnosis. At that time I was on a skiing vacation and all of a sudden I started having trouble breathing.
“Mut im Herz”, Brave Heart, by Jennifer, a pulmonary arterial hypertension patient Read Post »
pulmonale hypertonie e.v. – ph e.v.
pulmonale hypertonie e.v. – PHe.v. Adress: pulmonale hypertonie e.v., Rheinaustr.94 76287 Rheinstetten Phone Number: +49 (0)7242 9534 141 Association President: Hans-Dieter Kulla Association Email: info@phev.de http://www.phev.de
pulmonale hypertonie e.v. – ph e.v. Read Post »
PH Austria – Initiative Lungenhochdruck
PH Austria – Initiative Lungenhochdruck Wien, Österreich Adress: Wilhelmstrasse 21, A-1120 Wien Phone Number: +43 664 28 80 888 oder +43 664 22 88 888 Association President: Gerald Fischer Association Email: info@phaustria.org https://lungenhochdruck.at/
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