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 […]
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, 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
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 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 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 »
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 »
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 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 »
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
Pulmonary arterial hypertension explained in simple words, with excellent visuals, in a French educational video posted on the HTAPFrance YouTube channel.
Disabilities are often not obvious to the eye, as the infographic of the cover photo eloquently illustrates (source: LinkedIn post by Pam Cusick, Senior Vice President at Rare Patient Voice). This the case with many rare and chronic disease patients, including pulmonary hypertension. Behaviours of people with invisible illnesses may be hard for others to
Could you kindly tell us something about yourself? I have been president of the German PHeV since 2012. My input and the one of all others is voluntary! I am not a patient and I contribute to our organization in a “strategical” way. We have regional groups in nearly every region of Germany. Our group
On December 16, 2021 the UN General Assembly formally adopted Resolution A/RES/76/132 recognising the over 300 million Persons Living with a Rare Disease (PLWRD) worldwide and their families. The Resolution focuses on the importance of non-discrimination and advances key pillars of the UN Sustainable Development Goals (SDGs), including access to education and decent work, reducing
Congratulations to Prof. Marc Humbert for his election as President of the European Respiratory Society (ERS). Prof. Humbert has published more than 700 peer-reviewed articles, mostly in the field of pulmonary hypertension, and is widely considered one of the world TLs in pulmonary hypertension. In his inaugural speech Prof. Humbert said he would continue to
Patient Focused Medicines Development (PFMD) is a not-for-profit collaborative initiative benefiting patients and health stakeholders by designing a patient-centred healthcare system with patients and all stakeholders. The importance of patient engagement (PE) across the medicines development continuum is widely acknowledged across diverse health stakeholder groups, including health authorities; however, the practical applications of how to
During the COVID-19 pandemic, many health care systems suspended their non-urgent activities. Pulmonary Hypertension patients were subjected to the same rules as other patients during the COVID-19 pandemic, with no prioritised care despite their rare and severe condition. A consortium composed of pulmonary hypertension patient associations and scientific societies was created to launch the PH-CARE-COVID survey,
The European Society for Organ Transplant (ESOT) is delighted to launch the first edition of the ESOT Hackathon to identify and develop tools to serve the transplant patient community. Whether it is an idea, a scenario, a prototype, an app, an interface, a proof of concept or a turnkey solution, ESOT is looking for innovative
