PH Belarus
PH Belarus Minsk, Belarus Association President: Aksana Snezhko Association Email: phbelarus@yandex.ru
PHA Bangladesh
PHA Bangladesh Dhaka, Bangladesh Adress: C/O BUHS, 125/1 Darussalam Road, Mirpur, Dhaka-1216, Bangladesh Phone Number: +8801710-972498 Association President: Prof. Shah Monir Hossain Association Email: email@email.com http://pha-bangladesh.org/
PHA Europe
PHA Europe European pulmonary hypertension umbrella organisation 33 member associations Address: Wilhelmstraße 21. A-1120 Vienna, Austria Phone Number: (+43) 1 402 3725 Association President: Eva Otter Association Email: info@phaeurope.org https://www.phaeurope.org/
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/
PH Austria – Initiative Lungenhochdruck Read Post »
HIPUA Hipertension Pulmonar Argentina
HIPUA Hipertension Pulmonar Argentina Buenos Aires, Argentina Adress: Belgrano Bs.As.Argentina Phone Number: +54 (011) 4673 8063 Association President: Nancy Campelo Association Email: info@hipertensionpulmonarargentina.org http://hipertensionpulmonarargentina.org
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PHAA Australia
PHAA Australia Association President: Joan Godber Association Email: admin@phaaustralia.com.au https://www.phaaustralia.com/
“La malattia nel racconto dei pazienti”, a collection of patient stories from AIPI, the Italian pulmonary hypertension association
This boklet published by AIPI, the Italian pulmonary hypertension association features a collection of patient testimonies. The aim of the book was to enable patients to understand how it is possible to experience the disease with the same intensity, but approaching it from different points of view. And also to enable them to think of
2nd edition of “Nefes”, the Turkish PH patient association PAHSSc’s monthly newsletter
The 2nd edition of Nefes contains Interviews with health care professionals, an article about the PAHSSc President Kamil Hamidullah and a number of patient stories. Download the newsletter at this link: ac24e500cf111ce1a4741e3e0f69954a
2nd edition of “Nefes”, the Turkish PH patient association PAHSSc’s monthly newsletter Read Post »
“PH Human”, a JanssenWithMe platform provides support resources for people with pulmonary arterial hypertension and features a number of real-life experiences from patients
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
Tips for every day life with pulmonary hypertension by AIPI, Italian pulmonary hypertension association
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
Patient booklet on chronic thromboembolic pulmonary hypertension by AIPI, Italian pulmonary patient association
In chronic thromboembolic pulmonary hypertension (Group 4 of the classification of the WHO, World Health Organisation) pulmonary hypertension is due to the mechanical obstruction of the pulmonary circulation by thrombi (blood clots) that have progressively accumulated. In this booklet by AIPI, Italian pulmonary patient association you will find information on: Download the AIPI booklet on
The EU Clinical Trials Regulation came into force 31st of January 2022
The European Union (EU) pharmaceutical legislation known as the Clinical Trials Regulation comes into force today, the 31st of January 2022. It aims to ensure the EU offers an attractive and favourable environment for carrying out clinical research on a large scale, with high standards of public transparency and safety for clinical trial participants. Prior to
The EU Clinical Trials Regulation came into force 31st of January 2022 Read Post »
AIPI, Associazione Ipertensione Polmonare Italiana, Italian PH Association
AIPI, Associazione Ipertensione Polmonare Italiana (Italian Pulmonary Hypertension Association) in a non profit organisation founded in Bologna in 2001. AIPI provides different forms of support to patients. These include: Link to AIPI website
AIPI, Associazione Ipertensione Polmonare Italiana, Italian PH Association Read Post »
Patient booklet on lung transplant by AIPI, Italian pulmonary hypertension association
The “Guide to Lung Transplant” by AIPI, Italian patient association provides practical advice on the different phases of the patient journey: the ‘before’, ‘during’ and ‘after’. The last part of the book collects some patient testimonies. Download the AIPI “Guide to lung transplantation” at this link
Patient booklet on lung transplant by AIPI, Italian pulmonary hypertension association Read Post »
A research aims to determine reliability of blood samples taken by PH patients at home for remote monitoring, January 29, 2022
New research at Royal Brompton and Harefield hospitals in the U.K. will evaluate whether the levels of NT-proBNP, a heart damage biomarker that serves as a prognostic marker of pulmonary hypertension, can be accurately measured in a finger-prick blood sample that can be taken by patients at home and sent by mail to laboratories (this
Educational video about pulmonary arterial hypertension by HTAPFrance, French PH patient association
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
“What’s next for digital health after COVID-19?”, MedTech Views
What’s next for digital health after COVID-19? Here is an interesting article from MedTechViews by Naveed Khan, Director of Commercial and Business Development/Digital Health at Biotronik. The author says there is no doubt the pandemic has accelerated digital health but, for new innovations to truly work for both physicians and patients, help is needed to
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Rosie’s “Breathtaking Story”, submitted by the Belgian French association HTAP Belgique
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 »
Results of the 2nd International Organ Donation Cartoon competition!
What an amazing initiative to raise awareness of organ donation and transplant! Well done to the Turkish patient associations and organisations that were involved in its organisation, including our friends from the PAHSSc, the Turkish pulmonary hypertension association! Hundreds of wonderful, creative, touching and meaningful cartoons were submitted from all over the world, check them
Results of the 2nd International Organ Donation Cartoon competition! Read Post »
“Accelerating Clinical Trials in the EU for better clinical trials that address patients’ needs”, a joint initiative of the EU Commission, the European Medicines Agency Heads of Medicines Agencies (HMA)
On January 2022 a new initiative launched by the European Commission, the Heads of Medicines Agencies (HMA) and the European Medicines Agency (EMA) aims to transform how clinical trials are initiated, designed, and run. This initiative, called “Accelerating Clinical Trials in the EU for better clinical trials that address patients’ needs“, aims to further develop